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

Hoppy Easter

Here’s Hopping everyone of you had a very Happy Easter

The boys received so much from the Easter bunny, their family and friends which equaled a super fun day filled with lots of love and joy. Some people say their children “grow horns” after eating so much candy…Trey grew “fangs

What happened in Oakland?

Daddy’s Humor

Mike teased Jo Ann and Dr. Harmatz that he was going to add these pictures to Trey’s blog with the caption “I was just fine until I went to Oakland” I thought the pictures were so cute, I just had to add them – ha-ha!

Raising Awareness on Trey's Birthday

For those of you whom I’ve told, the sadness of your child “not being like all the other children his/her age” has begun. On more than one occasion, each one of the boy’s classmates has made a comment about Trey and his differences. I decided to take matters into my own hands to raise awareness of MPS by educating people on just how “Special” Trey is.



Trey has school on his birthday this coming Friday so along with signing up to bring snacks for his class that day, I’ve also decided to bring awareness to Trey’s disorder. I had a photo card made that I will attach to the kids treats. Along with a cute picture of Trey (and our female shaved, Golden ~ Laci), is this poem and his blog spot address.



My name is Trey,

my birthday’s TODAY!

I may look different…

more like “Special” I’d say!



Along with the treats

I was hoping that

you’d take a peek

to find out why…

I’m such a “Special Little Guy”!



www.ourtreystreasures.blogspot.com



*the picture I used is attached



My wish is that parents will visit Trey’s blog spot, read about Trey’s journey and explain to their children in simple terms why Trey isn’t exactly like them. My prayer is that the more friends Trey have that “understand” his condition, the less likely they will be to look at him any different and maybe even explain to other kids how cool Trey is.



With MPS Awareness Day right around the corner, May 15th…what better timing than our baby’s birthday to spread the word

And the GH test results are…

Hi Cami and Mike,



The growth hormone stimulation test showed that Trey is NOT growth hormone deficient.

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------



…along with the answers to my first thoughts/questions.



Cami,



I’m going to answer some of your questions and then we’ll talk more if you want.



Is this is not the results we wanted, correct? Yes and no. It is good that his pituitary is working, but yes it decreases the likelihood of a good response to growth hormone. Studies in idiopathic short stature typically have 50% response rates, but of course there are no data in MPS IV or any other MPS.



Will it be so much harder to get the insurance to cover it now? Depends on the insurance, some cover idiopathic short stature and some do not. I may have to write a letter requesting a 6 month trial which they sometimes will agree to even if they denied the first request.



Is there a scale of “how deficient” Trey is in GH? Not really, if the GH goes above 10 during stimulation test, this is normal, there is some grey zone with the test but Trey was not there. His peak GH was 19.6 so he had a very normal response. His IGF-1 remains low though, which suggests he may benefit if we can get the IGF-1 higher with GH treatment.



Is it possible that if he is very low, when you introduce a higher level of GH, could it “kick start” it? No, unfortunately the pituitary cannot be “kick started” like puberty can be. And his pituitary is working normal, he’s just not increasing his IGF-1 which is the main growth factor.



I hope this helps. Once I hear from your pediatrician, we’ll move forward with the request for coverage under the diagnosis of idiopathic short stature



Lynda Polgreen, M.D.

Assistant Professor

Pediatric Endocrinology

University of Minnesota