Sarah Ryan

Sarah Ryan is a spunky, fun loving seven year old girl with a form of Congenital Muscular Dystrophy called POMT2.  She has never been able to crawl or walk but has enjoyed the freedom of a power wheelchair for the last three years.  Sarah is a social butterfly and lights up every day when her school bus picks her up and takes her to school to be with her teachers and classmates.  Although Sarah is nonverbal, she has no problem letting you know what she wants or how she’s feeling!  While she can light up a room in no time with her wild charisma, Sarah is also loving, gentle and tender hearted. She’s famous for gentle pats of love on your back and always wanting to mommy any baby in sight! But most of all, Sarah is a fighter. In 2009 Sarah contracted a virus that shut down her respiratory system.  She spent one month in the ICU having to be intubated 2 ½ weeks of that time.  Doctors weren’t sure if she would even make it off of assisted breathing devices but by the time we left the hospital she was breathing independently again.  Today, she continues to thrive and fight. Sarah’s most recent battle has been against her muscle contractures that are painful and keep her from getting standing time that is essential to the health of her body. Sarah has recently completed 10 weeks of serial casting, a process that slowly stretches the joint muscles by casting the joints each week in an increasingly corrected position.  She was such a trooper through the whole process never losing her spirit and quickly making the adaptions she needed to keep up with all the activities she loves. Toward the end of Sarah’s serial casting, she was fitted for new orthotics to help keep her joint muscles stretched and position her legs correctly for standing in special equipment which brings us to why we need your help today.  Sarah greatly benefits from getting as much standing time as possible.  It helps keep her body strong, her digestive system healthy, her body from deforming, and continued painful contractures.  She has outgrown her regular stander and we would like to purchase Sarah a Standing Dani, a stander that allows Sarah to be mobile and independent in the standing position.  It is similar to the stander in the picture below but is powered by battery.  Sarah is unable to move the manual one very far on her own as her arm muscles are not strong enough. Unfortunately, insurance will only pay for the standing portion of the Standing Dani, not the mobile portion.  Traditional standers are stationary and do not allow independent mobility. Imagine keeping a young child content standing in the same position for over an hour at a time! The more time Sarah gets to spend joining in the fun with her siblings and friends, the more standing time she will get!   We are still waiting on final numbers, but the Standing Dani costs between $25,000 and $30,000.  We anticipate the insurance covers only the standing portion.   Therefore, we are starting a fund to cover the mobility cost, which we estimate to be $15,000.  We already have an incredibly generous dollar for dollar contribution to the fund so any money raised will be doubled! We are so thankful you are willing to consider running on behalf of Sarah.