Support Our Team, SPARKLE J ROSE

2017 Eversource Walk for Boston Children's Hospital

Sunday, June 11, 2017 | -161 Days to Go!

Team Captain:

Raised So Far: $2,455.00

Fundraising Goal: $800.00


Why We Walk

Team Roster Amount Raised

2017 Eversource Walk for Boston Children's Hospital

SPARKLE J ROSE

 Team Sparkle J Rose is  walking because a special little girl came into our  life with a rare genetic disorder. Jordynn was born with Greig Cephalopolysyndactyly syndrome (GCPS) This disorder affects the development of the limbs, head and face. The range and severity of symptoms may vary among affected individuals. Symptoms include extra fingers and toes (polydactyly), webbing or fusion of the fingers and/or toes, abnormally wide thumbs and/or great toes .A large head (Macrocephaly), a high, prominent forehead (frontal bossing), a broad nasal bridge, widely spaced eyes .It can include developmental delays, seizures, and Hydrocephalus. In many individuals with GCPS additional abnormalities and secondary conditions can be present or arise throughout their lifetime.

Between March2016 and April 2016 she underwent a group of surgeries affecting her lower extremities and right hand. Jordynn had a prolonged return to walking due to slow healing and the inability to weight bear through her right hand. After a few months of bed to wheelchair transfers only, the doctors cleared her for therapies. She participated in OT (hand therapy), Aquatic therapy and land based physical therapy up to 3x/week and a home exercise program. Jordynn progressed too fast resulting in injuries to her heel growth plates, stress fractures, and inflammatory responses in her feet. Doctors advised to stop physical therapy and to use the wheelchair as she healed. In the fall Jordynn began physical therapy with slow progression of weight bearing and low impact. From being in a wheelchair for an extended period of time she ended up with global muscle weakness. She now wears braces on her legs/ feet to increase support and help with walking. Goes to therapy up to 2x/week and does a home exercise program. Jordynn has made good progress towards getting back to her prior functional mobility with a few other setbacks .There’s still along way to go with rehabilitation. This has been one of Jordynn's toughest years so far but she continues to smile.

Team Sparkle J Rose goal is to raise $ 800.00 for the 8 months Jordynn has spent in her wheelchair fulltime. Children’s Hospital Boston has become a part of our family. Jordynn's team of specialists, nurses, therapists and other staff got her through 31 surgeries, overnight stays, numerous testing, evaluations, and diagnoses in the past 6 years. The compassion and creativity they have done to make it easier for Jordynn is unbelievable. How they go out of their way to make sure so many other children’s needs and hers are met. I would like to raise funds to help continue with their amazing care and research. Any donation large or small will go a long way to help children. Thanks Team Sparkle J Rose

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