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