Together we are raising money for Angelman Syndrome Foundation!
When we got the diagnosis that both of our sons (2017) had Angelman syndrome our hearts sank. Any parent can tell you raising children is no easy task. Having any range of developmental delays makes that road much harder, and we were not prepared emotionally. Our daughter, our eldest of three, doesn't have Angelman syndrome, and she was reaching all her milestones talking and walking by 9 months. She set the bar high when it came to our expectations for the boys.
While other kids were reaching their milestones; cooing, rolling over, crawling to walking, feeding themselves, potty training and the list goes on, our two boys were 6-12 months behind. The anxiety kicked in. The guilt I felt that my own DNA (I'm a silent carrier, maternal mutation on chromosome 15) was the cause and made me feel very low. Many sleepless nights due to Alexander's (older son of the two) sleep disturbances that kept him awake most of the night. This led to all of us being sleep deprived, growing more frustrated and more anxious. It’s hard to imagine the emotional rollercoaster our family was riding during their earlier years.
Fast forward to now, ages 7 and 9, they have caught up on most physical milestones. Alexander finally sleeps through the night and can put himself back to sleep if he wakes up. They can "talk" for being non-verbal (sometimes witty Spanish phrases, grandma has taught them) and can mostly write their name. Progress has been made, and they are RESILIENT and FULLY ENGAGED!
Why your donation MATTERS
1. Supporting research toward a cure and improving therapeutics
2. Supporting families through the Family Fund program and Counseling Services
3. Federal, State and Educational Resources
Family Fund Program is one that warms my heart. It truly makes everyday life easier for the person living with Angelman syndrome and his or her family caring for them. The Family Fund program provides adaptive devices, including bikes, wheelchairs, beds, iPads, and more. Even financial reimbursement is available! Learn more here
You can support by donating to our team. The process is fast, easy, and secure ... and you can be sure that it will benefit a great cause!
Thank you for your support, kindness and love.
The Chebul Family
To learn more about Angelman syndrome visit, Angelman Syndrome Foundation
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