Infusion #4

Again, no news is good news...nothing but good to report on Trey's 4th infusion!

Happy Easter,
The Lane's

TOO SICK!!

Darn it...We knew gong into today that Trey wasn't feeling so "hot" but we didn't realize to what extent wasn't "okay" to give an infusion...I now know the "perimeters" of what is too sick as opposed to having a cough and still allowing the infusion to take place. Today Trey's temperature fluctuated so we went ahead and started the infusion but about an hour into it came to the realization that he was running a little too hot. Our doctor was called in and the decision was made between the two of us to continue with the infusion but at an extremely slow rate (since we had already been an hour into the infusion with no reaction, we felt that this rate was safe to continue and that a tiny bit of the medicine was better than nothing at all.

So, good news, bad news; good news, no reaction...bad news, Trey only received about 1/10th of the medicine he should have if he wouldn't have been running a temperature.

Thank you over and over for your continued thoughts and prayers, well wishes and support!

XOXO
Cami and Mike (he had to be at work today) and the boyz

NO NEWS GOOD NEWS

NO NEWS IS GOOD NEWS

INFUSION #2 WENT OFF WITHOUT A HITCH AND NOTHING TO REPORT :O)

ONCE AGAIN, THANK YOU

FOR THE THOUGHTS & PRAYERS

WE'LL KEEP YOU POSTED,

LOVE, THE LANES

Preformed with Flying Colors

Hello all,

Sorry for the delay in delivering the latest update regarding Trey's very 1st infusion but our computer checked out on us last week.

Mike and I are so happy to report that our "little man" once again preformed with flying colors! Our day was a 10 1/2 hour day as opposed to the 8 hours we expected and Mommy fainted but other than that...all went very well! Trey will go for his second infusion this Tuesday. We should shave an hour off the length of our first day due to the fact that we won't have to got to admitting from here on out and hopefully a bit more just for the mere fact that we've all got the first infusion in our pocket ie: the nurse now has it down (a drug rep. flew in from Ca. to witness and be on hand for any questions the nurse had on administering the medicine), and I promise not to faint again...I'll explain.

I was sitting on the bed with Trey in my lap. A cream was rubbed on Trey's skin around the site of the port, the smell was so extremely strong that at the first "whiff" , I was light headed and nauseous. I turned my head and held my breath (did I mention I hadn't eaten anything yet that morning?) and before I knew it, the baby was off my lap playing, the bed was declined so that the blood could rush back to my head, an oxygen mask was over my nose and their were nine people surrounding me. I guess I was out for longer than the "normal" time, my eye lids stayed open as my eye lids rolled to the back of my head, I became pale, and I was sweating and shaking...who's the patient here??? What a waste of time...that too should cut at least 15 minutes off Tuesdays visit :o)

Back to the infusion...we had expected that Trey would be on a walking "drip line" and that we'd be able to roam the hallways...no such luck! Trey was confined to the hospital bed for a bit longer than 5 hours! To make matters worse, Trey was given Benadryl before the infusion (as he will 60 minutes before every infusion following). For some people antihistamine makes them drowsy, as in Drake, but for our other two boys, Broc and Trey, just the opposite happens...so much for a nap! This is what he/we did for the 5+ hours; watch a movie (sort of), read some books, be entertained by the "child care" volunteer on hand who brought up a super cool police car with lights and a siren, play with play dough, and a sticker book, nap for 10 minutes (at the most), eat lunch and then plead with Mommy and Daddy to play. This baby wanted so bad to get off that bed and play with all the big toys across the room...but he began the pleading about 40 minutes too soon. We know, we know...he is a GREAT baby and we are so lucky for that - to do so well for so long, we are truly blessed! Plus those 40 minutes passed quickly knowing that it was almost time for him to get down to play. He played for an hour as he was visually being monitored for a reaction...but not hooked up to any machines.

As long as it sounds and as tired as we were, it wasn't all that bad. How many parents get to spend uninterrupted time with their child, once a week for 5 hours at a time? We are finding a silver lining to everything thus far and if that was the longest day to be had, it truly wasn't all that bad.

I thought that if Trey didn't have a reaction to the medication during or after this first infusion that we would be "home free" but we were told that it generally takes 3-4 infusions before a reaction would occur as the body begins to build antibodies at about that time and as a result would be when we would most likely see a reaction. So although our prayers have been answered initially, we are still praying deep for the next month of infusion's to see more of the same...a whole lot of nothing.

As for the MRI:
The ventricles are normal in size and position, no shift of the midline, the signal intensity of the brain is normal = normal MRI of the brain.
As for the spine, abnormal cervical vertebrae and tight foramen magnum= we will be making an appointment with a neurologist to go from here with that.

Once again, our prayers have been answered and your prayers are working...much thanks and love!

Sincerely,
Cami, Mike and the boys


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PAR FOR THE COURSE

Hi Everyone,

Trey's first infusion has been cancelled due to the fact that the pharmacy at St. Joe's forgot to order his medicine...hummm, only 49 (Trey being number 50) on the medicine, the first time this medicine was ever going to be administered at St. Joe's (or in the state of Arizona) and only one in the entire US starting an infusion tomorrow...you'd think so many people would have been all over this one ???... go figure!

After the initial feelings of complete frustration, I have convinced myself that everything happens for a reason. Let's see...Trey's incision will have more time to heal, tomorrow is the 13th ya know, I will be able to bring Broc's valentine treats to his class versus him take them by himself on the bus (who knows how they would have ended up or how many would have even made it...pink rice krispie treats with sprinkles have been known to be the "breakfast of champions", esp. to a 5 year old and all of his bus buddies), more time for this hospital (and everyone involved) to get it right, more than likely they will be extra nice to us for a long, long time and I bet we will never have to worry about this happening again - EVER :o)

Thank you to everyone who wished us well...I have been a ball of nerves awaiting the unknown (now I get to wait longer.~maybe another reason...for me to mellow out a bit more before the actual infusion takes place).

We will keep you posted.

Hugs and lot's of Valentine Kisses,

Cami

Golf Tournament

We are counting our lucky stars and thanking our every "Treasure"...YOU !

Hi Everyone,

We have lots of great news to pass along in Update #3...

Trey's eye appointment on January 30th was excellent! He had no cornea clouding -hurray! According to the Doc., Trey's appointment was as normal as any routine exam. We have a follow up appointment scheduled four months from now .

Trey's surgery was yesterday and boy did we feel the love (and are still receiving e-mails and phone calls today).Thank you for all your thoughts and prayers! This child of ours is such a trooper, the surgeries went off without a hitch! The incision for the hernia is so small and looks wonderful. Trey's surgeon said he was expecting the worst given the situation but all he was presented with was an A-typical hernia, nothing out of the norm to report :o) The port is still bandaged up so I can't see much however... Trey hasn't even given it a second thought, not picked at it, pushed on it, questioned it, nothing! Although Trey took awhile to really wake up from the anesthesia when he did, not a single tear was shed. At the least, the doctor had hoped Trey would get some fluids down him last night but again, everything better than expected... Trey ate, drank, ate and drank some more. Today has been like any other day, not a single bump in the road.

We'll keep you posted on the results of the MRI...

Infusions start Wednesday, Feb. 13th and again we are praying for nothing but the best. Our hopes are that Trey won't have a reaction to the treatment. If all goes well we will be scheduled for Wednesday infusions from here on out.

The book fundraiser is over and for doing nothing more than sending out an e-mail to our family and friends, we are so blessed to report that $330.61 will be contributed to Trey's medical fund! Also, as a result of the sales, we have earned $505 in "free books" which we will intern donate as raffle prizes for the golf tournament. Thank you to all who ordered and a super, huge thank you to Margo!

Again, I've attached a few pictures...Drake and Broc the "cool" big brothers, Trey following his nurse on the truck Phoenix Children's Hospital let him ride down the hall to his surgery, and Trey after his "big day".

We are counting our lucky stars and thanking our
every "Treasure"...YOU !

All our love,

Cami, Mike and the Lane boys :o)

Update

Hi Everyone,

Another very busy week as I imagine will be the next and the next and the next...our life as we knew it will never be the same. This e-mail is sent for so many reasons but the first to let you all know that Trey will undergo surgery, Monday Feb.4th and to pray a little deeper for our sweet baby boy. The surgeon will fix his inguinal hernia as well as insert the port-a-cath into Trey's chest region so as to access him for his weekly infusions. During the time that he is sedated, he will also have another MRI run on him. This MRI has been ordered by the pediatric neurologist as he would like it to include the brain, the neck and the entire spine whereas the previous MRI, done almost a year ago, focused strictly on his spine. We were advised to have all three procedures preformed on Trey all at once as it is recommended that MPS patients undergo anesthesia a little as possible. This leads me to the sleep study. Many of you had asked, "why a sleep study?" The reason for the sleep study is they were evaluating Trey's airway. Most MPS kids have very large tonsils and a narrow windpipe and sleep apnea is a serious health issue. Trey passed his sleep study with flying colors, no issues to report. As you can imagine this news makes Mike and I so happy, for more than one reason - one more thing checked off our list of things to worry about and a better chance of him not having issues with the anesthesia this next Monday.

We finally got Trey's medical account opened and our very first deposit was so graciously given to us from Mike's work - The Tempe Officers Association (see attached picture of Trey - I think he knows as well as I do that this money is going to be the start of something big, just look at that smile!) The second deposit came from the money we made along with the money that our family and friends made and gave to us from our garage sale this weekend (see attached pictures). Words just can not express our gratitude - Thank you all!

I am so touched that so many of you have asked for other ways to help. As I stated, we have finally got Trey's medical fund bank account established and a paypal account to process the donations through. If you would like to make a donation directly to his account where 100% of the money goes to the medical bills, double click on the link on the right side of this page under Michael Trey Lane's Medical Fund. I can only think of so many ways to thank you all but the best I know of is just simply, THANK YOU! Thank you from the bottom of my heart!I've also been told that deposits can be made directly by going into any "Arizona Bank and Trust" to Michael Trey Lane's account, or by sending a check made payable to Michael Trey Lane, Arizona Bank and Trust, 4117 South Gilbert Road, Gilbert, AZ 85296.

Another great way to help is through the book fundraiser that is going on until 1/31/08 - only a few days left. If you are interested in ordering childrens books, 25% of all the money earned will be donated by my friend Margo back to Trey. ***If you go to Margo's website www.readforawareness.com you will see my name (Cami) listed under the title eshows.***

And yes, the Golf Tournament is on! It will take place at Western Skies Golf Course, Gilbert, AZ on Sunday, April 27th, details to follow...please save the date!

I am so excited to share this article with you. This was passed along to me by Isaac's parents. Ellen and Andrew live in Canada where 100% of their medical expenses are paid for by their health system. As I stated in one of my last e-mails, they started a non-profit organization where 100% of the money they receive go towards the funding for developing innovative treatments and finding cures for MPS VI patients. This is the latest on how their efforts are paying off. How can I not have faith and hope after reading such an article?

New Therapeutic Strategies for MPS VI

Calogera M. Simonaro, PhD

Lay Summary

The past decade has witnessed remarkable advances in the understanding and treatment of MPS VI. However, despite these advances, major challenges remain. For example, although enzyme replacement therapy (ERT) has recently become available for this disorder, it is extremely expensive and requires life-long infusions of recombinant enzyme. ERT also has very limited effects on the bones and joints, major sites of disease in MPS VI patients. Our laboratory has been using MPS VI animal models to study the mechanism of disease in bones and joints, as well as to evaluate new approaches to treatment. This research has led to a better understanding of the specific changes that occur in these tissues, facilitating the future design of more effective therapies. In the current proposal we will extend these findings and pursue two aims. In the first we will obtain fluid from the joints of MPS VI animals and patients, and measure the levels of several proteins we know are abnormal in MPS VI individuals. We will determine these levels as a function of age, and evaluate whether they can be used to predict the severity of disease and/or the outcome of treatment (i.e., biomarkers). In the second aim we will use MPS VI rats to evaluate the effects of two clinically available "anti-inflammatory" medications on the progression of disease, as well as one experimental medication that targets a pathway we have found abnormal in MPS VI cells. If we obtain evidence in the rats that such therapies are effective, these approaches could be easily evaluated in MPS VI patients, alone or as an adjunct to ERT.

PI: Calogera M. Simonaro, PhD

Associate Professor, Department of Genetics & Genomic Sciences

Mount Sinai School of Medicine

1425 Madison Avenue

New York, NY; 10029

...and on another note, this article was given to me from the gentleman at Arizona Bank with whom we opened Trey's account. He had asked me why the golf tournament and I recited Mark Dant's story, the next thing I knew he gave me this article that he had just read about families like ours...what a coincidence (see Mark's name towards the bottom)!

HOW TO SAVE YOUR OWN CHILD

NEEDHAM, Massachusetts (CNN) -- Early one summer's evening, five parents gathered at a suburban Boston home. They had wine and fruit tarts, cheese, crackers, and fresh fruit. Laughter and hugs filled the room.

But this is one gathering to which you don't want to be invited.

These parents have children with brain tumors. Frustrated with the lack of treatment options for kids, they meet once a month to come up with ways to fund medical research. So far, with no training in fundraising, this band of parents has raised more than $6 million in three years.

"Never underestimate the power of a parent with a sick kid," says one of the parents, Risa Sherman, whose 3-year-old daughter, Lucy Katcher, has a type of brain tumor called Juvenile Pilocytic Astrocytoma, or JPA.

Groups of parents like this one in Massachusetts -- parents shocked and even disgusted at how little money is being spent on their children's diseases -- are popping up in various parts of the country. Rather than wait for drug companies to do it, they're funding the research themselves.

When John Ragnoni's son, TJ, was diagnosed with JPA, "we thought the medical cavalry was on the way," he says. "We thought there must be just tons of research happening, that certainly there must be some cures or at least treatments for TJ."

But Ragnoni says he was "shocked" by the limited amounts of research being done on JPA, which strikes about 600 children each year. "We kept running into dead ends," he says.

That's when he and other parents started www.fightjpa.org, organizing bike rides, runs, and other events.

It's a problem with many rare diseases. Developing drugs for high blood pressure, high cholesterol, or depression, is lucrative because millions have those diseases. But when patients are counted in the thousands -- or even hundreds -- it's a different story.

Take neuroblastoma, a rare pediatric cancer. There are only 700 new cases a year in the US, according to Dr. Nai-Kong Cheung, a pediatric oncologist at Memorial Sloan-Kettering Cancer Center in New York City. He's developing a treatment that would be used by only about three or four hundred children a year.

"The industry doesn't think they're going to make money on these diseases, and they're right," Cheung says. "You have to answer to shareholders and everyone would say, 'Why are you investing in something that's not going to make money?'"

A few months ago, a group of parents asked Cheung what they could do to help further his research. "Do you have an extra 2-or 3-million dollars?" he asked them.

Gretchen Witt was listening. Her 3-year-old son, Liam, had just been diagnosed with a neuroblastoma. "I thought he was going to say $25 or $30 million. Two to 3 million is a drop in the bucket!," she says. "I thought, the only thing separating our children from having better odds and really horrible odds is just 2- to 3-million dollars?"

Then Witt saw a story on CNN about a family who raised $3 million through golf tournaments to fund a treatment for their son's rare genetic disorder. Initially told he wouldn't live past his 10th birthday, Ryan Dant graduated from high school in May.

"Golf tournaments is what I believe saved Ryan's life," says his father, Mark Dant.

But Witt knew golf tournaments wouldn't save Liam. "I don't like golf. I don't know anything about golf," she says."I think golf's a silly game."

So Witt thought long and hard about what she could do to raise money for Cheung's research. Then it came to her: As the public relations executive for a kitchen supply company, she did know people in the culinary world.

Working in three shifts, hundreds of volunteers -- from firefighters to stars of the "Food Network" -- baked 96,000 cookies in two weeks. "They totally had fun under very trying circumstances," Witt says. "For a while we didn't have heat in the kitchen to the point where you could see your breath. Nobody complained. Everybody kept focusing on the ultimate goal." Watch one mom's cookie crusade to help her child »

The ultimate goal was to raise enough money to pay a biotech firm to improve a treatment currently used to fight neuroblastomas. Witt says in the past few months, she knows six children who've died because the current treatment, which is working for her son, didn't work for them.

"These are six children I personally know, six children my son has played with," she says. "It drives me crazy these kids would have stood a better chance if this new treatment were available."

The cookies, which sold for $30 for a dozen, raised more than $200,000. Witt says she's thinking hard about the next project.

Sometimes Witt gets frustrated that parents have to sell cookies, or hold golf tournaments, to fund medical research. "It's totally sad. It's ridiculous. It makes me mad," she says. "But I can't get wrapped up in that or I won't get anywhere."

Witt says last week she received the best Christmas gift ever: Memorial Sloan-Kettering signed a contract with a biotech firm to begin work. "They're moving forward, and that's huge," she says.

Appreciative beyond measure,

Cami, Mike and boys

Thank you from the bottom of my heart

Hi Everyone,

Wow...what amazing family and friends we have (and friends of friends too)! Since I sent out the first two e-mail's about Trey and his diagnosis just ten days ago, our lives have been flooded with loved ones wanting to help, asking what can they do and writing beautiful sentiments to us for our baby. Thank you from the bottom of my heart for everything and all of you!

Just an update as to what has taken place since then...

Trey's Treasure's Foundation is in the process of becoming "Incorporated" after which we will file for our 501(c)3 status, which I hear isn't easy paperwork and should take 6-9 months to receive approval for. The Foundation will be for the purpose of obtaining grants and to help with medical research. I am determined to match our new friends in Canada whom have received $400,000 in grant money they have put towards MPS VI as their son, Isaac is also affected with this terrible disorder (check out www.TheIsaacFoundation.com for some inspiration from this little guy).

My wonderful new friend, Margo has informed me that we have sold over $900 in book orders and will receive 25% of the final proceeds made - remember the fundraiser is through the end of this month. Check out the books and our fundraiser at www.readfoawareness.com . Speaking of raising money, we have had so, so many people ask us if they can donate/gift money directly to Trey's Medical Fund so that he may receive 100% of the money as opposed to 25%. The problem we are having is that to open an account in Trey's name with our social security number or even his attached with it, we run the chance of having fraud committed against the account since the account will be given to the public on many different occasions. We have been told to open a Medical Trust/Health Savings Account for Trey's medical expenses with a Tax ID number attached to it, this way no fraud can be committed as no personal information will be associated to this account. Problem number two, we have been trying to get anyone who knows an attorney in this field to help us with this paperwork and anyone who knows anyone at any bank who works in this department to spell out precisely what form needs to be filled out to start up such an account. So back to the question...we are trying and are getting there. We can't even begin to express how much we appreciate all of you who have wanted to contribute to Trey's account and help us through this difficult time. Again, thank you!

About the medical bills...Mike and I and the kids are all on my insurance. My policy only pays 90% of procedures that take place in an out patient facility which means we are having to pay the other 10%. We have been told that because MPS VI is so rare, the drug that is available as the treatment for Trey is one of the most expensive on the market. Although their is no cure for MPS VI, there is a treatment called ERT (Enzyme Replacement Therapy) known as Naglazyme. ERT will be infused into Trey once a week for the rest of his life, or until I raise enough money to find the cure :o) We will pick a certain day of the week for the infusions and each week. We will spend about 7-8 hours out of that day once a week for the infusions (an hour drive, an hour to prep, a 4 hour infusion, half an hour to watch Trey for any reactions and an hour drive home) Preliminary numbers that have come in from the drug company for the infusions have been $200 out of pocket for us per week or $800 per month. I have also been given a number of $50 each week from a nurse at St. Joes that said although I shouldn't hold her to this number that she was told that St. Joes charged $500 for a four hour infusion ($50 being our 10%). Instead of talking about each cost separately, I'll just list what's lies ahead of our immediate future in the way of medical bills for all of you who have so kindly asked and have been so compassionate about our needs:

• Specialty Doctor Co-pays $30/ neurologist,geneticists,pediatric orthopedic,pediatric ophthalmologist
• Sleep Study $2,489 plus $289 for the study to be read
• *Genetic Panel - $55 Fed Ex fee
• Surgery Feb 4th - 10% of a bill from the hospital, from the surgeon (two procedures will take place on this day inguinal hernia repair and Port-a-cath inserted, from the anesthesiologist, from the lab, for the MRI, and for the person who reads the MRI.
• Infusions - from the high of $800 per month to the low of $200 per month
• Medicine - $15 per week
• Sonoran Quest - blood and urine draws
• X-rays - 10% Co-pay applies (neck/skeletal survey's)
• Gas
• Food for the long hospital visits weekly
• *We are also looking into changing Trey from pasteurized to non-pasteurized milk, to adding Vitamin D12 and liquid calcium to his diet.

*Both of the above at the advice of Dr. Amy, the geneticist in Maine, responsible of curing children of autism. Dr. Amy is the doctor running a genetic panel on Trey's blood to see if he could benefit for her RNA Formulas. These formulas are all natural and have been know to heal. We are so hopeful that she will have some great recommendations for Trey once she reads his panel. These formulas are not approved through the FDA which means our insurance will not cover them, but again if you get time check out the miracles that are coming out of her work at www.holistichealth.com !

...that's just this month and Feb.'s surgery with the start of infusions happening about a week afterwards...Mark, the father of Ryan whom has MPS I just informed me that he is fighting the legislature to get children's insurance coverage extended in the state of Texas to allow for coverage through the age of 21. Ryan does not the have the mental capabilities of holding down a full load in college, in return does not qualify to stay on his parents insurance policy and yet can't get a job with insurance for a pre existing condition. What our future holds is beyond me, I have to take it day-by-day. If you get a moment, check out www.ryansfoundation.org . Although the site hasn't been updated in a while to read their journey is extremely inspiring to say the least! Mark single handedly raised enough money to fund a scientist by the name of Dr. Kiakkis ( this Dr. is also responsible for Naglazyme and who I will be in contact with as soon as our non-profit gets up and running) to develop a treatment for his son, Ryan and all of the other patients with MPS I. Amazing what an annual golf tournament can do!

Speaking of pre-existing, I tried to get Trey put back on Mike's policy but we were not granted such luck and when we are able to sign him up under a second policy, we will be considered pre existing and will have to sign up under the Cigna plan for a year before switching over to the PPO policy. We were also denied for Social Security as Trey is not mentally and physically affected enough. The fact he's the only child in AZ with this condition does not assist us much with that. I had taken Trey to a Shiners clinic last summer and although we were not in need of any medical surgeries at that time (we were told to wait to see how the spin progresses) I was told that Trey was accepted as a "Shriners baby" so any future surgery that affected the bones or spine (both for us) would be covered by The Shriners. Needless to say the paperwork that is on file to date states that Trey was denied being accepted into the Shriners system due to the fact that he didn't need "surgical help" at that time. We were also denied the help of NORD (National Organization of Rare Disorders) because of our income. My insurance has a $2 million lifetime cap per person which we were told by the drug company that we would exhaust by July of this year. I still have many options to look at and for those of you who really know me, know I won't quit until every single avenue has been exhausted. Someone even told Mike and I to get divorced so that I would qualify as a single mother of three but to me there is already enough stress going around to put that out there so to me, that isn't an option. I believe that where there's a will there is a way and we will be blessed with that way.

People say that traumatic incidences like the one we are living through puts a strain on a marriage, I didn't believe that. My belief was that this would only bring us closer and this truly has but the unknown financial part of it all has really taken it's toll on Mike. He has always been the bread winner for the five of us and has done such a wonderful job of doing so (promoting, working midnights and weekends, overtime, holding over, coming in early, working holidays, etc.) but there's only so much you can do to make ends meet and he's feeling the pressure. Now, not only is he tired, he's stressed. Mike is also so frustrated in the system. We are being denied for every form of help I have applied for because we apparently make too much money but not enough for this not to affect our day to day living. So I was wrong, this does put a strain on a marriage and the love of my life. Please keep Mike in your prayers too, for his peace of mind and for his safety out there on the streets!

With that said...

I am so excited to announce that we (family and friends alike) are going to host a 1st Annual Golf Tournament Fundraiser. This is NOT set in stone but from where we stand right now, the tournament, silent auction, and raffle will take place Sunday, April 27, am tee time at Western Skies, Gilbert ,Arizona. Talk about coming "full circle"...this is the same place Mike and I (or should I say my parents) held our wedding ceremony almost 13 years ago. We are looking for 144 golfers (4 person scramble/shot gun) to fill the course. The cost will be $75.00 per golfer and will include golf,green fee's, cart, range balls and food. We are also looking for donations for the silent auction and the raffle as well as "hole sponsors" and food. If you know anyone or are someone who could help out in any way at all, any and all help in needed and very, very appreciated! Please see below the article that Mike found for me to answer some of my questions regarding gifting/donating and the tax implications applied.

I have attached a few pictures of Trey getting ready for his 2-Day Sleep Study last night...he was such a great baby and the technician told me (although it still has to be read by a professional) that Trey's study went great, that he had only one episode of apnea the entire night, due to his little cold...I guess you can have 5 episodes and hour) and that all looked PERFECT...We couldn't agree more!!!

We are so BLESSED to have each of you in our lives and thank you again and again for the love, support, and prayers...each of you are Trey's TREASURE!

With sincere gratitude,

Cami

Our Dismay

Hi Everyone,

As a follow up and a thank you to all of you whom have kept us in your thoughts and prayers...

Our 2 year old son, Trey, was to our dismay diagnosed over the holidays with the extremely rare, life threatening disorder known as MPS VI. This is all so new, so time consuming and so very devastating to all of us. I apologize for the delay in letting you all know of the outcome of the tests results but would like to pass on the brain storming that has taken place since being diagnosed. We want to find a way to make a difference in our sons life and hopefully a contribution to finding treatments and possibly a cure for this heartbreaking disorder.

We are in the very preliminary stages of starting a nonprofit organization to raise funds for Trey and every other person affected with MPS VI. This is just a quick note to let you know what is in the works for us so that if you or anyone you know own a business or would like a tax write off for what we believe to be an extremely worthwhile cause, please keep our foundation in mind. I will be updating you on our Tax ID number, a possible web site, future fundraisers, etc.

I have my "Momma Bear" brain in gear and am going to fight this fight with all that I am for our son. Please continue to keep us in your thoughts and prayers as we are learning about and now living with this disorder and adapting to this new way of life.

All our Love,

Cami, Mike, Drake, Broc and Trey Lane

The purpose of Trey's Treasures Nonprofit is to raise funds to increase public awareness in hopes of contributing to earlier diagnosis and to support medical research into developing innovative treatments and potential cures for MPS VI patients.