A Whole New World

June 16th, 2009

Trey’s Myringotomy surgery (tubes in ears) was early, early this morning and I am so happy to report that he performed like a CHAMP! Drake spent the night at his friends home so we only had Broc and Trey to contend with in this early morning hour. To our relief both boys woke up in great moods. Trey was on the verge of tears when he noticed that Broc was eating and was told he couldn’t have anything to eat until after his surgery. But true to form, Trey was a very cooperative little guy and waited to eat – Whew, that could have gotten ugly ~ thank God Trey is such an obliging child.

We almost ran into another hitch when the anesthesiologist noticed that in the section marked “other items of concern” was something very foreign to her – it read MPS IV, she excused herself and came back with the head medical director to ask a few more questions of us and to voice their concern. We are very lucky that Trey’s EKG and echocardiogram have all been normal, that Trey has done well under anesthesia and that we were convincing enough to ease their apprehension, otherwise I don’t think we would have been able to continue as planed and been sent home to reschedule at an actual hospital instead of in a “surgery center”. Mike and I were extremely worried of having Trey put under, this only made matters worse.

It’s so hard to be afflicted with such a very rare disorder that almost 100% (here in Arizona) of the time even people in the medical field don’t have a clue what Trey’s disorder is and we have to go into a complete dissertation every single time…it’s always such a painful reminder of how little is known about MPS and how much this all stinks!

Trey’s surgery was uneventful. Our day was just as the doctor had warned us it would be, Trey would be a bit crabby and tired. I wish we would have know to bring some Tylenol because as soon as he woke up he complained of his ears hurting. At home we gave him medicine and soon he stopped telling us his ear’s hurt. When we ‘tested’ his hearing Mike and I both noticed a difference – yahoo! Throughout the day Trey would complain of his ears hurting, once I gave him his prescription ear drops and once before I got around to giving him his Tylenol, he fell asleep. I am so happy to have finally gotten this done for Trey and am looking forward to the benefits this will make in all of our lives.

We love you our little trooper and hope you have begun to hear the difference of a whole new world

Happy Anniversary to WHO?

June 13. Today was my in-laws 45th Anniversary and we were lucky enough to get to spend a good part of their day with them. After attending Drake and Broc’s first swim meet of the summer, my dad and gigi took the boys to see the movie “Up”, which permitted Mike and I time to take John and Joyce out to brunch for their Anniversary. At brunch we were presented with a card for Trey and a gift for myself. For a moment I thought my in-laws had confused the occasion. John explained that their solution to anniversary gifting would be to gift their money to us for Trey’s medical account, something they had agreed on from the get go. Also, they both know how much I lean on the one word “BELIEVE” hence, gave to me a Celtic cross with the word BELIEVE etched across the front. I was moved to tears and so appreciative of their selfless gesture. I am so thankful for in-laws like them; the boys are so extremely lucky to have such wonderful grandparents…together we are all so blessed to be cared for and loved by such an incredible family.

This Little Light of MINE!!!

VBS ( Vacation Bible School ) is over~ the boys already can’t wait for next year. The three of them had such a great time at VBS this past week as well as their singing performance Friday night, followed by the carnival that evening. Trey absolutely loves the new songs he learned, especially the one where the light’s go out, he get’s to turn on his little hand held candle light and sing, “This Little Light of Mine”. I walked in on him singing this song, saw it light up his face and reflected on how he is my little light and I’m gonna’ let him shine!

Ta-Da...I DID IT!

If it could only last…Trey is doing so well these days that today he even went to the restroom all by himself! Being that Trey is only 3 feet tall (on a good day) he can’t reach the toilet, but today he decided he was going to do it all by himself, stand on his tippy-tippy toes and ‘shoot for the moon’…”I DID IT!” was what Drake, Broc and I heard aloud. The three of us came running and the older two decided that this was a ‘photo op’ and to add it to Trey’s blog. Now that Drake and Broc are big readers, they keep up on Trey’s blog and tell me what to add and also what picture to capture. Not exactly the photo I would have taken but I love that they love to be a part of this

"Schools Out For SUMMER!"

It is so crazy to think that Broc will be in 2nd grade and Drake in 3rd and that at this same age in my life is when my most vivid memories began. Trey loved his intersession preschool class and got a kick out of being assigned homework, just like his Draker and Brocer. After just 11 classes Trey learned how to spell and almost write his name – he keeps saying and writing, T R Y… I think it’s a sign, you go boy! We took the three boys for ice cream with permission to order whatever their hearts desired as a way to celebrate their ‘graduating’ into the next grade...check out “Mr. Busy” in that photo-haha!



Trey is in the process of testing for a preschool program offered through the state known as “priority preschool”. Along with tuition and transportation that the state will provide should Trey be accepted, most importantly we are told that priority preschool will focus on Trey’s speech delay and if I can get my point across well enough even his motor skills…who knows, maybe through this screening process, the state will recognize that Trey NEEDS physical therapy and begin to help us pay for those appointments as well. Trey “failed” his first screening in the process ~ this is a good thing and continues us on to the next phase which will consist of a full assessment. I have to say that it all felt so “mechanical”, but to me, it was anything but. We should be called back sometime in July for the next testing process and know immediately afterward if Trey will be accepted into this program.



Along with the help for Trey’s speech should he get into priority preschool, surgery to have tubes inserted into both ears has been scheduled for June 16th. I believe that this will make a world of difference in his speech and feel so bad that we didn’t catch it earlier. The fact that Trey never had ear infections steered us clear from ever focusing on his ears. We pray that this surgery will be the answer.



Trey’s 4 year appointment with his pediatrician was very emotional for me. Trey had to endure four shots and mommy’s heart had to swallow the news that Trey is now in the -3% for height. Trey was such a trooper for this appointment and preformed like a pro (probably because he’s been to far more doctor’s appointments than the average four year old), he knew exactly what to do at every command and once again proved to be the Perfect Patient!




Believe it or not, help came knocking on our door (or should I say in our phone line). A company by the name of Genentech-Access to Care Foundation was referred to us after the second denial of growth hormone through our insurance company. Genentech informed us that Trey medically qualified and were calling to see if he might financially qualify as well for GH. Should we meet the criteria, the GH would be offered to us free of charge until our appeal was settled. To our surprise, we qualified for assistance and our first shipment as well as our first lesson on administering the medicine will take place within the next month. Honestly, I don’t know how I feel. I am anxious and extremely nervous. I am also thrilled at the notion that this may work for Trey and of course have all the hope in the world that it would work but the medical world makes me second guess what my heart wants to believe. With the start of growth hormone also begins the stringent every 3rd month appointment with the pediatric orthopedic to keep a close eye on the curvature of Treys spine.

Physical therapy has been going so well for Trey. Before PT Trey would push his hand on his thigh to be able to walk up the front step to our home or take hold of the flower pot for assistance, he now accomplishes such a feat all by himself. Trey has gained abdominal muscles, which I’m positive has helped strengthen his spine. Proof of this is that the red mark that is evident on his lower back (due to his Kyphosis) every time I remove him from his car seat is much smaller and not so red and painful looking~ either he is sitting up straighter due to his newly developed abdominal muscles or his spine is straightening. Also, Trey can now sit “cris-cross-apple sauce” like his classmates, something that when attempted before PT would cause Trey to fall backward when he tried. The first time I saw my baby sit in this position with a ‘big boy back”, all by himself, I cried…the things we take for granted with a healthy child are such huge milestones with Trey. My mom has advised me to focus on what Trey CAN do instead of on what he can’t.



How do we begin to thank everyone who has been involved with raising money for Trey’s medical fund??? Without all of your aid, we could no where begin to afford what our insurance doesn’t cover like the physical therapy 2-3x’s per week, as well as being able to take part in the Anat Baniel Method and even swim lessons that so obviously help Trey. Without the assistance of Trey’s medical fund we would most likely only be able to choose one of these therapies and only once a week… therapies that are so clearly advancing Trey’s motor skills and in my opinion keeping some of the symptoms of this tragic disorder at bay. Yes, he is one busy boy each and every week, but it’s so worth every minute~ especially since we truly believe we are seeing results! Not only has this fund provided for us the means to travel back and forth to Minnesota to find a correct diagnosis for our baby, it has also opened doors for Trey that financially, we would never be able to justify and has allowed us to do more than just ‘sit and wait’ for a treatment or a cure. For all these reasons and more, we THANK YOU!



I will never understand why and will forever ask the question but what I do know is that Trey’s misdiagnosis brought us to people of whom I would have never met and who now are keeping me “afloat” …I don’t know what kind of mental state of mind I would be in without these remarkable people who understand my every care and concern…all of who were introduced to me because of Trey’s misdiagnosis of MPS VI. I read their blogs and how the ERT is working for their children and I weep in pain at the thought that this could have been my babies story too. In the same breath I hold out hope that the ERT for Trey that is in the process of clinical trials in Europe is working and that someday soon, Trey will be back on track. It is the most agonizing pain to have both hands tied behind your back and just wait for the news. I thank God for this support group, for the hope they give me as well as helping me to hold on to the promise of what lies ahead for Trey

“It’s the thirsty person who seeks water”

“The more trouble we are in, the more God is able to grow us”

“The desert is God’s testing grounds of our faith”

“As absurd as it sounds, we should thank God for the desert days, for being in the desert makes us appreciate what we may have missed before”

Desperate in the Desert (Psalm 63) - last Sunday’s service. This entire service hit so close to home for Mike and I. As we sat through the service we squeezed hands a bit tighter, feeling like the pastor was talking directly to us. We were meant to be there as I believe we are meant to be where we are with our children. For this I thank Him for helping us dig a bit deeper, for making us appreciate the little things and for now knowing the difference between pain and pain ~ the things that use to trouble me now don’t begin to hold a candle to the sting we endure daily

One day at a time…The Lanes

My Brother My HERO

At breakfast this morning I caught Broc and Trey praying. Broc led the prayer by saying, “Thank you God for letting us have a little brother who never is afraid when he get’s shots and stuff” I’m beginning to think that Trey is Drake and Broc’s HERO, funny how that works.

MAKING A DIFFERENCE

This past Sunday in Peoria , Trey, Mike and I attended a free children’s clinic for children with special needs using the Anat Baniel Method. This method is a non-medical based approach that uses gentle touch and movement to enable the child with special needs to improve physically. It asks children to move only in ways which are within their true capabilities, creating a feeling of safety, encouraging a willingness to expand into new abilities. This clinic as well as the sessions we have already had with Mr. Mike, (a certified practitioner in the East valley and a personal friend of Mike’s sister, Cathy), we believe will help Trey develop beyond his limitations. It has been recorded that infant’s and children’s progress often surpass medical expectations. Sunday, Mike and I experienced first hand “Mrs. Michelle” help Trey with his movement, balance, grasp, spine strength and even an increased awareness of his motions (not to mention how Trey slept like a baby after his lesson). Again, what doesn’t hurt him... Mike and I have so much hope for Trey and this method. Both Mr. Mike and Mrs. Michelle have children with special needs which drew them to this work and are extremely compassionate people…thank you both for your caring ways These trained and certified practitioners of the Anat Baniel Method are offering another free clinic in the East valley this August which we have already reserved an appointment.

Happy MPS DAY!!!

HAPPY NATIONAL MPS DAY

MAY 15TH



IT’S OKAY TO ASK US ABOUT MPS

IT’S OKAY NOT TO ASK US ABOUT MPS.



WE’RE A FAMILY NOT A TRAGEDY.



HONESTLY, WE KNOW, WE TRULY KNOW YOU CARE!



YOUR KINDNESS MAY NOT ALWAYS BE ACKNOWLEDGED

BUT IT IS ALWAYS FELT

A Warm Welcome

As part of “Courage”, the National MPS Society’s newsletter, they include a section in every issue called “A Warm Welcome”. The Society asked that I introduce our family by writing a column for their newsletter back in 2008 when Trey was first diagnosed with an MPS disorder…I wasn’t ready. I was asked again this past week and this is what I came up with. For those of you who are members of the National MPS Society, this should appear in one of the next two issues of “Courage” under the “A Warm Welcome” section.





Mike and Cami Lane who live in Chandler, Arizona with their three son’s, Drake (8 years old), Broc (7 years old) and Trey (MPS IVA) who just turned 4 this past April. Mike, our hero, has been a police officer for the City of Tempe for the past 12 years. When Cami (aka Mommy) finds the time to fit in a “bit of normalcy”, she take’s to her job in the skies as a flight attendant for Southwest Airlines.



Drake is a 2nd grader who enjoys art, music and sports. Drake participates in soccer, wrestling, flag football and swimming. Swimming starts the week after school let’s out where Drake will defend his 2nd place state record in the breaststroke. As the oldest of three brothers, Drake has proven to be the brightest and best big brother around. He is so protective of his ‘baby’, Trey that most times mom calls him, ‘brother hen’. Drake wants to be a professional football player when he grows up and you better believe we will nurture that aspiration...maybe the payout for such a lucrative career could fund a cure for his “baby”?!



Broc will complete the 1st grade in 18 days, just ask and he’ll let you know. Being the middle brother, Broc enjoys the best of both worlds~having a big and little brother. Broc always plays so sweet with his little brother Trey and forever includes him in all his fun. Broc is a gifted athlete who holds his own, ‘playing up’ in age on his big brothers athletic teams. In addition to being one of the fastest kids in the neighborhood in all age groups, Broc enjoys the outdoors, always with his shoes off. When asked what he wants to be when he grows up, Broc will answer a veterinarian 100% of the time.



And then came, “Mr. Busy”, Michael “Trey” Lane. Misdiagnosed at the age of two with MPS VI, Trey has gone through more than the majority of adult’s will in a lifetime. After enduring forty three infusions of Naglazyme ‘for nothing’ a multitude of tests later and just days before his 4th birthday Trey has now been correctly diagnosed with MPS IVA.



Trey is your typical preschooler who loves his peanut butter and jelly sandwiches, riding on his electric “racer”, Mickey Mouse, The Arizona Cardinals, his “Cardinal birdies” as Trey calls them and his new love…swim lessons. Aside from the usual life most four year olds live, Trey also attends physical therapy twice a week, and a new approach to brain/hand coordination type therapy once a week. Trey’s brothers, mommy and daddy also incorporate PT into his everyday playtime which is the “sly” approach to ‘work’ for a child with such a bone disorder. Trey is also a member of “HopeKids” which affords our entire family local events free of charge as a way of instilling hope to children with life threatening illnesses.



Although Trey stopped growing at about 2 ½ years old he is head and shoulders above the rest. Trey is such a kind and compassionate soul. Mike and I believe that God knew exactly what he was doing when he blessed this family with Michael Trey. Trey make’s our world go around, he brings a smile to everyone’s face he encounters and is the best baby brother two little guys could ever, ever ask for. According to daddy, “he is my little bit of somethin’ and a lotta bit of everything”.



Together with our family and friends we had started a non-profit for Trey known as “Trey’s Treasures”. With our family, friends and the community behind us we have accomplished grand things. Our fundraisers have included our very own “Trey’s Treasures” golf tournament, “Vegas Nights” with Spark of Hope, watermelon slices on the 4th of July, Usborne books sale, Mini pumpkins for a mega cause, Trey’s Treasure Chest for Hope dinner auction, Take Down for Trey, a neighborhood garage sale, Silpada jewelry party, a Swim-a-thon and car wash, WAMU grand opening dedication and fundraiser, Carebear Preschool fundraiser, a golf tournament in honor on my sister-in-law’s late father, a chili cook off, Tempe Police citizens Academy donations, Avon sales fundraiser, the Hard Chargers motorcycle ride, children who have raised money for Trey by opting out of birthday presents instead to give replaced presents to Trey, selling lemonade and popcorn, along with giving their winnings in contest’s to Trey’s medical fund and last but not least a kindergarten class that had 25 trees planted in a National forest in honor of Trey!. This year we are gearing up for another “Trey’s Treasure Chest for Hope” second annual dinner auction and “Dunkin Cops” dunk booth at the Tempe Town Lakes Oktoberfest. Due to the head and heartache that came with the misdiagnosis, we weren’t up to the 2nd Annual Trey’s Treasures golf tournament but have high hopes for next year.



Along with all the fundraisers, we have also been blessed to have Trey’s journey catch the attention of the media. Trey’s story was run in numerous newspapers and ran on many local television stations. Is it those eyes or those curls? We don’t know but what we do know is that what ever it is, Trey’s sweet looks have helped us spread the word and raise awareness of MPS (Trey’s blog alone gets a average of 20 hits a day from North America as well as countries far and wide). After just one article in the state newspaper, we were blessed to be brought together with Taylor (MPS VI) and his family as well as the honor of meeting one of the MPS Societies Board of Directors, MaryEllen Pendleton and her family. This media attention also bestowed us with the generosity of a few local gentlemen. One of these men provided Trey with free full body massages at every infusion he underwent in the hospital, the next provides us free photo processing until a cure is found and the other graces Mike and I with free car repairs and service indefinitely. These blessings come full circle and make myself as well as my husband whom as a police officer doesn’t often get to see the good in society, by opening our eyes to the GREATNESS in people and the love and concern they have for their family member, friend and child who is a complete stranger to them but who just the same is a part of their community.



And our story wouldn’t be complete without mentioning our own “Patch Adams”, Dr. Chet Whitley at the University of Minnesota . We would still be spinning if it weren’t for him and his team of astounding colleagues. The level of care and concern, the attention to detail, the infinite amount of time he gives his patients are with out question a representation of the best of the best. The MPS family is so lucky to have such a brilliant man on their team and we are so privileged to call him Trey’s doctor.



My strength not only comes from those near to me but although far, oh’ so close to my heart, my new and dear friends who are mom’s of children with MPS. Without Margo (Nathan MPS VI), Kaylene (Taylor MPS VI), Jenny (Holden MPS VI), Ellen (Isaac MPS VI), Jen (Eddie MPS IV), Cassandra (Payton MPS II) and Darla (Kikki and Justin MPS IV) to bounce thoughts, cares, concerns and tears off of, I don’t know how strong of a mom I could be for my baby Trey. I have come to recognize that the families of MPS are beyond an amazing group.





Our ‘normal’ will never be the same. In order for me and my family to survive, we too must find a “new normal”…whatever “normal” is anymore. In Don Piper's words: "The new normal is about living to bless. We can be a victim or a victor. It's a decision; it won't come naturally. Take your tragedy and turn it into triumph. Take your test and turn it into testimony. Take your disappointments and turn them into divine appointments. It's a decision. It's a choice. It's not what you go through but what you do with it that matters." Life is never problem-free. But when the bottom falls out, when tragedy strikes, then healing requires a change of perspective. Healing means you've got to find a new normal.



Thank you MPS Society for hearing our story and for all that you do for each and every one of us families that are “fighting this fight”. God Bless you all Y



Appreciation beyond measure,

Cami, Mike, Drake, Broc and Trey Lane

Check list update

To catch up on all the happenings in Trey’s busy life, I thought I’d write a checklist of everything recent to bring us all up to date.



*Trey had a ‘happy visit’ to the dentist back in January. This visit was to get Trey familiar with the dentist office, having someone look and feel around in his mouth and also for the dentist and I to be on the same page as far as Trey’s dental health was concerned. I was so pleased with Trey’s dentist, he had done some research on MPS conditions and expressed to me that he was not only willing but also excited to learn along side us every step of the way. This very generous man also suggested that we might want to come for visits every three months as apposed to every six and that he would only bill every six months as far as insurance would go. Well, that said, we went back in April for Trey’s first cleaning and x-rays and the good dentist said Trey’s teeth and gums looked great, that Trey did wonderful and if we felt comfortable, we could come every six months until we have something to worry about, but that as of now, we should treat Trey like every other patient.



*Again, we were denied insurance help for growth hormone. I am in close contact with Trey’s endocrinologist who as we speak is appealing this for the second time. It has now been about 18 moths since Trey has gained a pound or an inch. My heart aches at the thought of him living his life at this height but have to put this pain in God’s hands and hope and pray that something good will come of all this in the way of research and medicine.



*It has been decided by Mike and I based on the following advice of Trey’ s doctor’s that we keep his port in place.

The advantages of taking out the Port-a-Cath are:

1.) Reduce risk of infection or damage to the catheter (which is relatively low, especially since Trey has not really had problems with it thus far).

Disadvantages:

1.) Trey could "lose" (permanently) one of the few locations in the body where one can put in such a cather.

2.) He would likely want to have an additional surgery in the future to put in a new catheter for the clinical trial, and this would require another surgical procedure.

Advise;

If it is bothering him or you, then it would certainly be reasonable to take it out now.

If it is not a significant problem, and monthly infusion of heparin is not a huge inconvenience, it would be reasonable to leave it in place.



Thus said, I will be ‘flushing’ Trey’s site monthly and pray that all goes well.



*The results from Trey’s EKG came back and all was well. This same test was preformed back in November in Minnesota but for it to ‘count’ as part of the Oakland study, it had to be administered within the past 90 days. Mike and I were so happy to see that both locations felt there was nothing to be worried about in the way of Trey’s heart at this time.


*Swim classes have begun and Trey’s is in his glory. He loves to go underwater and he kicks like crazy when it’s his turn on the turtle kickboard. Trey has express how much he like’s this swimming class so I have added him to a waiting list to go twice a week in hopes that not only will he learn how to swim but to also add to his weekly physical therapy.






*Trey’s third preschool session ended this past Friday yet so un-true to form, Trey wanted nothing to do with his graduation ceremony (not even the grass skirt or lei) and sat in my lap the entire performance. The next class geared towards preschool started yesterday and so far Trey is off to a good start. He had homework his first day and was so proud to bring it back to school in his backpack, just like his big brothers do. Testing for the two types of preschool the city offers will take place at the end of the month…we will let you know the results of that array of tests soon after.




*Yesterday was also our follow up appointment to Trey’s first hearing appointment. Again, fluid was found behind both of Trey’s ears. Mike and I decided that the next logical step is to have the tubes inserted into both ears in hopes of draining his little ears and giving him a chance to hear better as well as the anticipation that Trey’s speech will see instant improvement.



We are extremely grateful for all the love and prayers that come our way and again, can’t thank you enough for it all. If you feel like making a comment to Trey’s updates, please remember to click “comment” at the bottom of each update on his blog instead of replying back to our home e-mail. We are hoping to keep all comments on his blog site so that when we print it, it will be all inclusive.



With all sincerity,

Mike, Cami, Drake, Broc and Trey

AMAZING GRACES

Mike and I are always amazed at how people near and far make donations to Trey’s account but never as far away as Switzerland . Today a $150.00 donation came in from Switzerland ! A complete stranger who gave so selfishly to a child he has never met…AMAZING the ability of people to feel the need to help. God Bless such generous people. Thank you from the depths of our soul.

Handprints

My Mother’s Day was so nice; the boys (the big one included) were all so good to me



Of course this day has turned into a very emotional one for me and to add to my own inner thoughts as I look in wonder at our three beautiful boys, I was given a card that Trey had made in preschool that sent me into a tailspin. Imagine knowing what we know and reading a poem such as this;



Sometimes I get discouraged

Because I am so small

And always leave my fingerprints

On furniture and walls.



So far so good, I actually thought at this point that this card was specific to Trey and that every child may have had their own poem.



But everyday I’m growing-

I’ll be grown up someday

And all those tiny handprints

Will surely fade away.



Okay, so I lost it! I fell to pieces wishing so badly that this could be true for Trey too. Drake and Broc didn’t understand why I was crying until they read the card and I’m sure you could imagine how the sweet smile on Trey’s face turned into a look of confusion. I was so amazed at how ‘grownup’ Drake and Broc were and the fact that they could comprehend my feelings of sadness as I tried to read Trey’s mother’s day card aloud. Trey in his usual fashion, landed a wet kiss on my lips, looked into my eyes and smiled.



The poem ended with;



So here’s a little handprint

Just so you can recall

Exactly how my fingers looked

When I was very small



I remembered these types of cards being the very best Mother’s Day gifts from Drake and Broc. I remember being so thankful that their teachers had the kids make handprints for me because it was something I hadn’t done since the boys were babies. This time around didn’t get the same reaction. I never thought something so straightforward like watching your child grow and admiring a simple handprint from them to recall how small they once were would bring about such sadness. I sat still praying silently that one day Trey too would grow and that one day I could compare his handprint from 2009 to one years later and be able to smile in amazement at how big all my boys have gotten. Please God hear my prayer

Happy Mothers Day!

I do believe that this email is the BEST mother’s day compliment I could ever imagine …Valerie’s words have made me feel so “rewarded” for what I go through as a person and most importantly as a M O M.



"Happy Mothers Day" to one of the most profoundly loved Mom's on the Earth...
"Trey's Cami."



What a tremendous start to the year, these first 4 months of 2009 have been for you, Mike & Trey. I pray for your continued endurance and strength. I know God made Mommy's with an extra "power button" that no one sees but us..we can dig deep down and push it, just when we think we can't go anymore. Your power button must look like the big red button on the "Staples" commercials! Wow. Where do you hide that thing? Your power is inspiring. Your will is inspirational. Your LOVE is not of this world, but from behind the gates of heaven. I will keep praying for you & your family. I loved the postcard you sent out to Trey's class..only you could think of something sooo creative and educational!!!!

I want you to know your work here on Earth will be felt for many more years after you are gone and in Heaven. I can't imagine your reception into the Lord's arms! The gates will be flung open and his angels trumpets will be saluting your endles efforts here on Earth. God Bless you Cami. I am so very proud to call you my friend.

Love, Valerie
Val and her boys




Me and My 3 little Men

MPS and The Swine Flu

May 1, 2009

The National MPS Society has been closely monitoring the developments across the nation and the world regarding the spread and containment of swine influenza. We hope that all of our members are safe and healthy and would like to remind you of the serious nature of this illness.

Individuals with MPS and related diseases need to be extra cautious as they are at higher risk for complications from this or any infection. If there are confirmed cases in your area, please limit your exposure to public places including school, work, shopping malls, or other areas with a large number of people. This is especially important for those with MPS.

You said what?

Trey had another hearing test this past week (the first attempt was in MN) and again went into it with slight congestion. I was assured by the doctor that he would still be able to form a very clear opinion about what may be happening with Trey’s hearing and give me a few options at the end of the appointment. Trey was not very cooperative during the hearing test and therefore the technician along with the doctor concluded that the test itself could not be used. What was found was fluid behind both of Trey’s ears and the fact that he has a flat malleus (or hammer) as seen in both ears. Our options at the end of the appointment were; 1) try Trey on an antibiotic to dry up the fluid 2) have ‘tubes’ inserted into Trey’s ears. I asked if we could start with #1 and go from there. So, here we are more than half way into the ten day prescribed duration of the antibiotic with what I believe is ‘not doing the job”. At our next appointment I am pretty confident that we will be discussing option #2. Unless our new form of PT does the job on its own…more to come on this exciting find!

1st Fundraiser Usborne Book Sales

Our very first fundraiser was initiated on January 2008 by who is now my very dear friend, Margo Anderson. Margo was the first mom that I was in contact with soon after Trey’s initial diagnosis of MPS VI and a life saver for a multitude of reasons (Margo’s son also has MPS VI). Margo is a rep. for Usborne books who dedicates her business to raising money for the MPS Society given that their family has complete coverage insurance through the military. Margo offered to host a book show for Trey. Not only would Margo so kindly give 25% percent from the sale of the books back to us, we would also earn free books from the total sales of the show. Margo suggested we might take the free books we’ll earn and make raffle baskets with them for our upcoming golf tournament. Margo put the fire under me and started the ball rolling. Margo offered to select and order all the free books for us. The baskets we were able to make from the free books were fantastic. We made eight different baskets with about a dozen books in each, ranging in ages from baby to teen’s~ Margo’s selections were superb. Not only did we earn money for Trey’s medical account from the sale of the books, we also received proceeds from the raffle of the baskets. My treasured friend Margo, you are “the Wind Beneath my Wings”, thank you for all you do for me and my family on so many levels.

Be sure to check back, as we will highlight fundraisers that were held in Trey's behalf, each month. There are lots to highlight. Are hearts are full of the generosity and love that we have and continue to feel from all our Treys Treasures.

A Big Brother's Prospective

“Mom and Dad, we’re not so lucky that Trey has MPS but we’re very lucky we got such a cute and funny baby” Drake Lane 4/22/2009

* PRESS RELEASE *

BioMarin Initiates Phase 1/2 Clinical Trial for GALNS for Morquio A Syndrome

NOVATO, Calif., April 21, 2009 - BioMarin Pharmaceutical Inc. (Nasdaq: BMRN) announced today the initiation of a Phase 1/2 clinical trial for BMN-110 or N-acetylgalactosamine 6-sulfatase (GALNS), intended for the treatment of the lysosomal storage disorder Mucopolysaccharidosis Type IVA (MPS IVA), or Morquio A Syndrome. The company expects to report initial results in the first half of 2010.

"We plan to leverage our clinical, manufacturing and regulatory expertise to bring a new therapeutic option to the significant number of untreated Morquio patients around the world," said Henry Fuchs, M.D., Chief Medical Officer of BioMarin. "GALNS has been shown in mice to reach important tissues including cartilage and different zones of the bone such as bone marrow, calcified bone and importantly, the growth plate. Our experiments have also shown that GALNS is taken up into human Morquio chondrocytes in vitro and reaches the lysosome to clear keratan sulfate."

Chris Hendriksz, M.D., Consultant in Metabolic Disorders, Birmingham Children's Hospital, added, "This is a very exciting announcement for our patients who have been waiting so long for a potential therapy. Hope of a therapeutic is now within reach for these patients, and Birmingham Children's Hospital is very honoured to be part of this exciting development."

The Phase 1/2 study is designed as an open-label, within-patient dose escalation trial in approximately 20 patients followed by a treatment continuation phase. All patients to be enrolled in the study have already been identified. During the dose escalation phase of the study, subjects will receive weekly intravenous infusions of BMN-110 in three consecutive 12-week dosing intervals. The objectives of the Phase 1/2 study will be to evaluate safety, pharmacokinetics, pharmacodynamics and to identify the optimal dose of GALNS for future studies.

Birthday Post

Here is a picture of Trey on his birthday – on his way to school. I told him he could pick his outfit and wouldn’t ya know, he picked his “BORN TO BE WILD” t-shirt…if that doesn’t send me a messageY I love you my little present and want you to know that so do so many others today and everyday as Linda so sweetly wrote~God bless you our little blessing, Mommy





Dear Trey....How wonderful your birthday is today, April 17th A birthday is a time for celebration - for surprises - yummy treats - balloons - presents lots of presents - everyone who loves you near and far is celebrating your very special day - because it is your day - but besides the great time and all the other great stuff that goes along with your birthday - it means something very dear - very cherished - very tender - so very heart felt and deep down within every single person - whose life you have come to know directly and indirectly and especially your very special Dad, Mom, brothers and families/s. Trey, you were brought into this world as a 'present' to your Dad and Mom and brothers - just like your brothers, Dad and Mom - We all are 'presents' from GOD ' each little soul brought into this world to teach - sometimes really big stuff and sometimes little stuff to each other - Sweet, Trey - housed in your precious body - with those gorgeous eyes of yours - your precious playful and endearing personality is a very special 'present' - because the day you were born changed the lives of every single person who knows you - because the day you were born every single heart and soul is praying to GOD - hoping and wishing and most of all BELIEVING - that the power of faith - BELIEVING in miracles will help you grow up to be even more of a 'present'. Trey, look at what you have already done in your young life - You are making people pray - hope/wish - BELIEVE in miracles - I would say Trey, your are quite the 'present' to all of us for look what you have already accomplished. I would say and I am certain I am not alone when I say this "Trey, you are teaching us all so much about ourselves as we are all touched by your presence. We are all stretching ourselves out of our comfort zones - We continue asking questions, Researching for answers -A 'Blog' has been tenderly set up to share all of your news - Dollar Bills are given and Thousands of Dollars are raised with fundraisers - and did I forget to mention 'Love' how each and every one of us loves and adores you in our own special way - however, let me tell you Trey - Without a doubt your Mom and Dad love you in a way that no one on earth could possible understand. They are the Champions for out of love they brought your precious soul into life and they -through their love for you - is bringing out the very best in all of us for you. Trey, you are quite the cherished, treasured 'present' ....

Happy Birthday and many more!!!! x0x0x0x0xx0 Linda

Happy 4th Birthday my sweet, sweet baby

For your birthday entry I wanted to give you your astrological forecast that Papa John found for me all about you. Mommy was in tears to read your signs strengths.



Those born under this element are regarded in astrology as adventurous, active and outgoing. Aries are surprisingly trusting. No matter what upheaval, challenge or triumph they confront - an Aries has a wonderful ability to bounce back. Their faith in life and in the future remains untouched by hardship. Their gift is that they are always children at heart and that the world is always a magical place for them. Aries people are ‘doers’ rather than ‘talkers’. They are the impulsive, act now, ask questions or have doubts later, sign of the zodiac. Aries people love challenges. Aries love to race in where angels fear to tread.





God has blessed us with you, you in turn, are such an remarkable blessing to us!



I love you, Mommy

AVON FUNDRAISER FOR TREY'S TREASURES!

My children’s' cousin, Trey Lane , was born with a very rare genetic disorder that causes great difficulty for this little angel and his family. Trey's Treasures was set up to assist with the endless medical costs that the Lane family endures in helping to meet all of Trey's special needs.



In appreciation for the extra blessings that my Avon business brings in for my family, I am happy to announce that every month 10% of my profits will be donated to Trey's Treasures . This will be an indefinite fundraiser, so there will be on-going donations made to the fund every single month from now on. In addition to these donations, I would like to personally extend an extra 10% discount to you off the total of your first order if you send me an email to let me know that you would like to become a new customer through this special offer. My email address is avon.lisa@yahoo.com, and my Avon website is youravon.com/larmijo . Please let me know if you would like me to drop an Avon book off to you or send you one in the mail, however you can also view the current book online through my website. New books come out every 2 weeks, and orders are placed for fulfillment every 2 weeks as well. Orders can be made by emailing me your order or by placing your order through my website. If you place your order on the website and you live in the valley please make sure that you select the option to have your order shipped directly to me so that I can personally deliver it to you, which will save you the shipping charges. If you live out of the area you can select the option to have your order shipped directly to you, however with this option you pay Avon for your purchase rather than your Avon Representative, so unfortunately I would be unable to extend the extra 10% first order discount to you, however, the profits made from your order will still go towards the monthly donation to Trey's Treasures . When your order is placed for delivery to me, no payment is due until your order arrives and I deliver it to you.



Please spread the word to any of your friends and family who may have an interest in Avon products, as more orders mean more donations to Trey's Treasures ! I will indefinitely extend the 10% first order discount to every single person who hears about it as long as they notify me with an email. :-)



Thank you,

Lisa Armijo

March Madness

Breathing a sigh a relief, I am so glad that our own “March Madness” is finally over. Travel is fun, but not under these circumstances! So after the last medical trip of the month, I can report the latest and not so greatest.

Oakland started out so non-stressful, just routine…much easier than anything Trey has been through in the past. Well, yes, much easier on Trey, but oh so much harder on Mike and I. We were informed that the Phase 1 and 2 trials for the upcoming treatment for MPS IV was not awarded to the U.S.A. but instead went to a town in England . In the same sentence we came to realized that this meant IF phase 3 came to the U.S.A. it would not be for approximately three more years. My first thought was, “Were there!, when does it start?” I was told that trials usually don’t welcome children under 5 years old (Trey will be 4 years old tomorrow, April 17th). Another piece of my heart began to break and all I could think about was my dear friend Margo. I remember saying to her over and over again how I couldn’t imagine how she did it, how she stayed strong for Nathan having to wait years for the Naglazyme treatment to come but in the meantime sit helpless, only to watch the horrible disorder take a toll on her son’s body. I felt so thankful that if Trey had to have MPS 6 (VI) at least there was a treatment available to us NOW. But sadly enough, this too was now my fate. With the new diagnosis come no cure and No Treatment! Again, a mama bear with the will but no way to fight for her baby. To have to wait even 9 months (which is about what we thought it would be originally) seemed like a lifetime away, but three years?! Only time will tell…doctors have been wrong before, maybe they will be again this time, in our favor.







Our visit to Oakland was scheduled to be very busy but because Trey was doing so well with all of his appointments, we had a little R&R in between. Trey went through a physical exam, gave blood, accomplished a six minute walk test with vitals taken immediately after, gave a urine sample like a pro (he thinks it’s funny to get to pee in a cup), measurements of his weight, height (standing and sitting 3x’s a piece) and knee length were taken, a visual test, an echo and an ECG along with a 3 minute stair climb test that he mastered – Trey climbed 69 steps and could have kept going but the time was up. Mike and I were so proud of him! Dr. Harmatz and Jo Ann (his clinical research coordinator) were so accommodating and informative. Other than the sad news the “Assessment” visit was not too bad.



Being away from Drake and Broc again got a bit harder with the start of each good-bye and they too felt the effects of all our time away…we were all glad to be home and together again.



We are awaiting the results of the Echo and ECG along with the levels found in Trey’s urine and blood. Everything else was pretty much about collecting information for a later time (after treatment has taken place and the results of this visit can be used to compare with the effectiveness of ERT).



We are looking into having Trey’s port taken out since ERT seems to be so far out and that there is always the possibility of getting an infection in Trey’s port. The surgery for this should be relatively “routine”.



All of the information that the drug company and the insurance company needs for growth hormone has been submitted…if approved, a nurse will be out to teach Mike and I how to administer the GH shots. I pray that this will work, even if just centimeters at a time.







Looking forward to starting swim classes and a new type of therapy along with Trey’s 4th Birthday !



Blessings,

The Lanes