When we lived in Utah, I met a spunky-funky gal, who is incredibly talented!
Her name is Jessica, and she recently shared a story with me about her brother’s family.
They are in need of our help!She says…
“I have a brother named Tyler and his wife is Lisy. My brother’s children Natalie (8) and Alice (2) have a condition called “Leaky SCID” (severe combined immune deficiency). The literature says that 1 in 40,000 people are carriers of this gene, and a child can only be affected by this gene mutation if both parents carry the gene; then there is a 25% chance that a child from two carrier parents will be affected. There are only two cases in the entire U.S. that are reported each year so it is extremely rare. The treatment is a bone marrow transplant. The success rate is 90%…..fatality rate is 1 in 10. Long term side effects of transplant are infertility and possible chronic Graft vs. Host disease. Graft vs. Host means that their bodies might reject the new marrow and does not want to accept it as their own. A perfect sibling match will reduce the chances of Graft vs. Host disease. Their son Blair was a match for Natalie but unfortunately there was not a sibling match for Alice. However, they were able to find a donor on the registry list that was a perfect match for Alice. The girls will need to be isolated after the transplant for a few months so Tyler and Lisy will live at the Ronald McDonald house by Primary Childrens while the boys stay with Lisy’s parents. It is an extremely difficult time for them.
I am trying to raise funds for them as you can imagine the finances will be stacking up. I thought if I reached out to all that I can, we can help them. Our family has a blog to check on the progress of their treatment.”
Aren’t they adorable!!
So, from my heart to yours, please visit their family blog, read about them, and help if you can!