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Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

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July 6, 2013 by Carrie Ostrea

Meet Our Special LMHF Kids

Camilla Johnson

6-year-old Camilla Johnson from Summerlin hanging out on her new swing provided by our Little Miss Hannah Foundation

From Camilla’s mom, Lori Johnson:

A few months ago while at speech therapy with our daughter Camilla, our speech therapist shared with us a flyer from the Little Miss Hannah Foundation.

She explained to us that there was a medical equipment grant program that might help us get the swing we wanted for Camilla. It almost sounded too good to be true! We wanted to purchase a platform swing for her, but our funds are pretty tight right now.

Camilla has Rett Syndrome, a rare genetic disorder affecting mostly girls. Camilla is currently in a clinical trial at Boston Children’s Hospital with a promising new treatment for Rett Syndrome. Camilla and I travel back and forth to Boston every 10 weeks for the next year, so much of our efforts and funds are going towards participating in this study .

She has severe apraxia of speech and her entire body. Any motor movement is extremely difficult for her. We have been amazed at the motor tasks she has been able to accomplish during occupational therapy when the platform swing is used. Her OT explained to us that swinging provides vestibular input and helps Camilla better organize her body and motor movements.

We are now so thrilled to have our very own platform swing in our home, and Camilla absolutely loves it and squeals with delight whenever she is on it!

Thank you so very much Little Miss Hannah Foundation for this wonderful gift for our sweet Camilla.

You have made our special girl very happy!

Filed Under: Blog, Featured Right, front side, LMHF News, Local Rare Kids Tagged With: Grant Recipient, Local Rare Kids

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