A number of months ago I was blessed to stumble upon this heartfelt blog of a families journey with their two daughters out of five children, Natalie and Alice have what is called Leaky SCID (Severe Combined Immune Deficiency). To some this may not sound so serious but following their blog diary it has opened my eyes to the seriousness of this illness these poor little ones have had to endure.
Just to give you an idea of what these precious little girls have to go through at 8 and 2 years old...
Just to give you an idea of what these precious little girls have to go through at 8 and 2 years old...
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.
Please take a few minutes to stop by their blog (click on the button below) to see if there is anyway you can help this family with donations or spreading the word. Dear readers, I do have to warn you though it is heart breaking to watch this video diary and read their daily struggles on their blog but if you feel it touched your heart by this difficult journey this family has to go through please feel free to help them. Thank you!
Love,
“Random Act of Kindness” pass it on
ReplyDeleteAllison, using your BLOG to raise awareness of Leaky SCID (Severe Combined Immune Deficiency) is terrific way to increase knowledge and understanding of the deficiency. I encourage all readers to take the time to read “Fishes for Marrow Wishes” and view the video diary. My wife pulled me aside one evening and shared their struggle with me and I was amazed with their courage and strength to endure the process of healing medically and emotionally. Thank you for sharing this with me, Thank you for sharing this with others…..
Chuck