Meet Ian Winfrey. Ian is a a sweet 8 year old who lives in Grove. His parents are Susan and Rod Winfrey and he has 2 sisters, Madison and Chloe. Ian was born with a neurological condition called Angelman Syndrome which is a deletion in his maternal 15th chromosome. Some characteristics of Angelman Syndrome may include a stiff jerky gait, developmental delay; absent speech; seizures, fascination of water, and a super happy/ excitable demeanor. Despite Ian's diagnosis, he is one happy, loving, laid back, beautiful boy who makes everyone he comes in contact with, smile. He teaches us all to enjoy the small things in life, smile at the beauty around us, and laugh even in the midst of trials.
He is now 8 years old and is currently in a wheel chair, however, a lot of "angels" walk and Ian is showing much progress in taking many assisted steps. He currently attends Grove Lower elementary and has a wonderful team of teachers, aides, speech, occupational, and physical therapists that help Ian progress daily. Ian also receives extra therapy at home by a local pediatric PT twice a week and by his family.
Ian and his family will be attending the Dallas Angelman Syndrome Walk this year May 18th. Will you please help by supporting this cute little guy?
Angelman Syndrome Foundation hosted 30 walks in 30 cities across country to raise awareness, funds to find a cure for Angelman syndrome. More than 10,000 supporters attended and raised approximately $1,030,000 to date! Not only is investment in AS research expected to help those living with and affected by AS, but other conditions that share related symptoms such as autism, epilepsy, Rett Syndrome, Prader-Willi Syndrome and even forms of cancer. By investing in AS research, we have the potential to positively impact the lives of more than 12 million people worldwide. Since 1996, the ASF has funded over 66 research grants totaling over $4.6 million. The most aggressive funding of research is aimed at finding therapies and treatments for curing certain AS symptoms.
Thanks for sharing your amazing son with us, Susan! Also, Ian's mom is the founder and creator of Hipperbibs(www.hipperbib.com). Please check out her website and see if it might be something your child needs...there are so many great designs and they are very durable!
No comments:
Post a Comment