Yssabelle's Journey

Yssabelle is 6 year old  little girl with systemic mastocytosis. This rare and debilitating disease is a day to day battle. While not much is known about this disease, there was a conference in Minnesota the month of September that focused on this rare condition. In an effort to learn about day to day coping, treatment methods, and to hear about research to find a cure, we were able to attend thanks to everyone's generous donations. We can not thank everyone enough!   Because of the 20th Annual Mastocytosis Society Conference we were able to meet specialist from all across the country, and many patients who have this rare disease as well. The information we learned was invaluable! We are lucky enough to consider the people we meet there our Masto Family.  They are so supportive and caring they are truly a blessing.   At the conference we had several specialist look at Yzzys medical chart, according to them there are several red flags. Her bone biopsy and GI biopsy slides were stained incorrectly.  Dr.  George from the University of New Mexico had restained and examined her slides. Her diagnosis is confirmed as Systemic Mastocytosis.  She does have bone involvement, which the original report left out. They are still working to determine just how much bone involvement she has and which type of Systemic Mastocytosis she has.     

A year ago we started seeing Dr. Terry Chin, in long Beach. After our long stay in Boston. He has been a life saver for Yzzy. The only bad thing is that insurance will not cover any of the fees or travel expensise. So everything is out of pocket. It's well worth it but it's incredbly hard to spend $3000 every six months when we have to visit. 

  Your donation will go directly to making a positive influence on one child's life, in a way you can't imagine. Your donation will cover the flight to get to Long Beach, CA from Oklahoma (and back), the hotel,  food while on the trip and the doctors fees.

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