Meet Charlee: 2019 Family Advocacy Day Child Champion

Charlee is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Charlee will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Charlee is a very motivated 9-year-old from Rhode Island. She was born prematurely at 30 weeks and diagnosed with periventricular leukomalacia at Boston Children’s Hospital. Unfortunately, as Charlee grew older, her diagnosis progressed to cerebral palsy.

Her delays are most significant in gross motor skills—she’s still learning to stand and walk independently. She wears bilateral ankle foot orthotics and utilizes a walker or wheelchair stroller to travel longer distances.

Despite her challenges, she’s always very positive about her diagnosis, happy to participate in therapies, and constantly looking for ways to become more independent. She has had three major surgeries at Boston Children’s in the last four years and continues to receive botox and phenol injections there on a regular basis. She looks forward to her time at the hospital because she is so comfortable with her doctors!

“We have found a comfort and skill level with Boston Children’s Hospital that we didn’t have anywhere else,” her parents share.

Charlee has a great relationship with both Dr. Shore and Dr. Fogleman at the hospital. She has been seeing them both for many years and their ability to connect with her and make her feel comfortable has always been incredibly valuable to Charlee and her family.

Join us in welcoming Charlee to 2019 Family Advocacy Day!

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