He loves to dance and is taking about 3-5 steps off the couch. I am still waiting for him to talk...how awesome it would be to for him to say Mama and Dada!!!
His last PMD test (3rd out of 4) has been paid for THANKFULLY, by the PMD Foundation. It has been such a struggle getting these genetic test done and paid for, because insurance won't cover them!!!! UUUGH! I was supposed to hear this week about the results- but haven't (after 3 phone calls---another loooong story!!!)
My friend has 2 children with Leukodystrophy. After several years of going from doctor to doctor and trying to get the test covered, they may have reached a break though in finding which Leukodystrophy her children have. As a mother, this is good and devastating news together. There is no cure and our children's fate seems inevitable. We are so very blessed to have these amazing kiddos in our lives, but it is heartbreaking to watch them suffer and struggle. We need to spread the word about Leukodystrophy and help fund research for the cause.
My friend is having a benefit concert for her children Bryce and Annalise on May 21st. It is in Queen Creek. I'll share the link. I've had so many friends, family, coworkers, therapist and volunteers ask how they can help---this is it-- show your support please, be there for us! This concert is only $7!!! Medical bills, equipment, therapist and education really add up quickly! We LOVE our kids sooo very much but need your support to help them have the best life possible. So come support us, enjoy some awesome music and show us your love!!!
Ragtime & Stride Piano Benefit Concert
| Time | Saturday, May 21 · 7:00pm - 8:30pm |
|---|---|
| Location | Queen Creek Performing Arts Center 22149 E Ocotillo Rd. Queen Creek, AZ 85142 |
