As many of you know, our daughter Valerie was diagnosed with Angelman Syndrome. AS is a rare genetic disorder affecting only approximately 1,500 individuals in North America. Is estimated that this happens between 1 in 15,000 to 1 in 30,000 births. Kids diagnosed with Angelman syndrome will require constant care for the rest of their lives, it affects everyday activities. It causes severe developmental delays, speech impairment with minimal to no verbal language, seizures, and motor difficulties, sleep disorder, they sometimes can sleep 4 to 5 hours a night. You can learn more about AS at www.angelman.org
Let me tell you about our angel Valerie, she is 13 years old, she looks happy all the time, she only cries when something is really hurting her, she doesn’t speak, can’t communicate with us, so as you can imagine at times it is very frustrating trying to figure out what’s hurting her. She needs to be fed, bathe, she wears diapers, and needs to be watch 24/7. Mentally Valerie is like a 1 year old baby, she puts everything in her mouth, we’ve had to take several trips to the hospital because of her swallowing coins. She loves to eat, she loves to go to the pool, taking baths, she loves to pull hair for some reason and gets a kick out of it. I think most of our family and friends have experienced the hair pulling, it hurts lol, overall she is very sweet. She has two brothers, James 17, Jayson 4 and 1 sister Vanessa 16. Valerie is a very lucky girl she has a big big family that loves her and supports her. One of the things Valerie’s dad and I wonder sometimes is what her voice would sound like if she said mom, dad or even NO I DON’T WANT TO, maybe someday.
Another way our family is trying to help Valerie is by raising money for the Angelman Syndrome Foundation, which works to advance awareness and treatment of AS. We will be attending the Walk-a-thon on Saturday, May 17th, 2008 in San Diego California at 10:00 am. On this date, 17 cities across the country will be walking along with us to raise money for ASF. We hope to have a fantastic team representing Valerie, and invite all of our family and friends to join us.
We realize most of you will not be able to attend the walk, however we would greatly appreciate your support. Donating through Valerie’s Web site is simple, fast, secure, and tax deductible. www.firstgiving.com/valeriehaunanisteam It is also the most efficient way to make a contribution to our fundraising efforts. We also encourage you to forward this to anyone who you believe would be willing to help our cause. If you would like to donate by check, or want to discuss AS or our fundraising efforts, contact me at Andreaa30@yahoo.com or 562-208-6531
We would like to thank you for taking the time to read our story. We believe there are many more cases of Angelman Syndrome that have gone undiagnosed or misdiagnosed for either Cerebral Palsy, Autism, or Mental Retardation. Because of this, we will strive to bring attention to this disorder so that we can classify any undiagnosed or misdiagnosed case and help diagnose future cases with ease. One day, we know we will find a cure!
God bless you and your family always.
Sincerely, James Sr, Andrea, James Jr, Vanessa, valerie, and Jayson.
I may not speak, but I have much to say.
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