Clara Shipp Update

Clara was selected as Happy Smachah in 2018 when she was just 5 1/2 years old. Her entire life has been spent fighting a rare disease, unique to her. She battles a “congenital myopathy” which a type of muscular dystrophy including neuropathy presenting her and her family with life threatening episodes, yet Clara perseveres through it with amazing spirit. Read Clara’s Original Story.

Please enjoy this update on Clara provided by her family this week!

Update by Andrea Shipp

Clara is a 9 year old going on 16. She is strong willed and doesn’t let anything get her down. She has defied all odds; she uses a walker to get around, but can run and jump and do many things that the doctors never thought she would. Right now she is growing her love for gymnastics and goes to class weekly. Clara is in 3rd grade and loves school….well mostly for the social aspect, but that’s fine for us, as she has finally made some good friends. Clara is most excited to attend Muscular Dystrophy camp this summer and meet other campers with similar medical needs, interests, and abilities!

A diagnosis was discovered for Clara in early 2019. Clara has a genetic abnormality on the neurofascian gene, a gene that was discovered in 2019. Clara is known to be one in only a handful of people world wide. Since this is such a new diagnosis, there is no known prognosis. Additionally, it has been determined that Clara has a progressive neuropathy that seems to be advancing most in her facial musicals and is affecting her ability to swallow.

We are excited to see Clara at this year’s Smackah in support of Halle Glasser and we are looking forward to seeing you! Registration is open to reserve your spot.