Kellan was diagnosed with Angelman Syndrome (AS) at 14 months old. AS
is a severe neurodevelopment disorder that effects 1 in 15,000-20,000
live births. The symptoms include: Developmental delay, balance
disorder (Ataxia), seizures, complete lack of speech, sleep disorders,
and will require life long care. Kellan is now 3 years old.
Raenalynn was diagnosed March 19th 2013 at the age of 3 with an inoperable brain tumor. Shortly thereafter she started chemotherapy and radiation treatments. She completed 30 radiation treatments over the course of 6 weeks and is still taking chemotherapy. It is projected that on March 21st, 2014 Rae will have completed her trial oral chemotherapy course of 12, 4 week, cycles. She also has had a total of 5 MRI's. She turned 4 on Nov 22nd and we were so very happy. We didn't know if she would make it to her birthday. DIPG is rare and doesn't leave many survivors if any. Only 10% of children make it to 18 months and less than 5% live up to a ceiling of 5 years. Our best hope right now is an inactive tumor. After radiation her tumor had shrunk 47%. That is a big deal! We pray that her chemotherapy will continue to work.
Our goal for Rae is to get her to Disneyland. Let's do it!!
Rae
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