There's a new fund through the Children's Hospital of Philadelphia dedicated to research on FPIES to help find the cause and a cure/method of treatment. Obviously, since my son has FPIES this is a cause near and dear to my heart. If you feel like donating to a worthy cause, or would just like to educate yourself on what FPIES is/how it affects daily life, click here.
In related news, we passed milk (I may have already posted that/did an online happy dance about it), failed chicken, and passed wheat (in that order). Failing chicken was a big letdown, but dairy and wheat open up SO MANY more doors for foods for our son than chicken closes, so it's now being seen as more of a minor set back. Tomorrow we move on to soy...insha'Allah we pass this and I can start planning a BIRTHDAY CAKE. :)
3 comments:
God willing he passes soy. That will give you so many options. There are a lot of delicious soy products out there.
I prefer donating to life threatning diseases like leukemia.
Most children outgrow Fpies by the age of 3, it's not like they can't eat anything.Worse are children with celiac. It's also so rare that I think money should be spent on dying children.
@ anon - So if a disease is rare...it's okay for it to go unresearched? It's okay for doctors to have no knowledge that the condition even exists? (my son's pediatricians (2 of them) had NEVER heard of it).
There are life threatening diseases, and there are diseases that severely affect quality of life. FPIES a) can be life threatening and b) if it's a less severe case still quite severely, at least in the infant stage, can impact quality of life. My son had a life threatening shock reaction which WOULDN'T HAVE BEEN LIFE THREATENING IF THE ER STAFF WAS EDUCATED ON FPIES AND KNEW HOW TO RESPOND.
Are you telling me you wouldn't donate to help with Alzheimer's research, or macular degeneration, or give money to the smile train to help a child with a cleft lip get surgery...all because the people with these conditions aren't "dying?"
It's your money, certainly, but I'm obviously going to be passionate about something my son has, and to come on MY BLOG...ANONYMOUSLY...and tell me my cause isn't "good enough" for you?
And one more point, it's not as rare as the make it out to be. You know why their numbers are so low? Because children aren't getting diagnosed. My son isn't one of their "numbers" because his doctors didn't know how to diagnose him. I am a member of a FPIES board that offers support and has truly gotten me through this past year...there are 211 families on just this one board. There are more on various facebook FPIES groups that I'm in. And on top of all that, there are the poor children who are suffering who's parents DON'T know it's FPIES, don't know where to turn, and can't find answers. I'm lucky I stumbled upon FPIES during an internet search for "oat allergy." I was at a loss for how to help my son. I hope in the future parents don't have to feel so hopeless and alone. THAT'S what this fund is about.
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