The family and friends of a young girl diagnosed with a rare neurological condition came together in Bovingdon to raise money for a medical device that will help her to communicate.
Charlee Baldwin, eight, has suffered from Moebius syndrome since she was three months old. Only one in every 500,000 children is diagnosed with the condition, which can cause facial paralysis, limb differences, and hearing loss.
Charlee is unable to talk, smile, eat orally or swallow, and is fed via a gastric tube. She also has hypotonia (low muscle tone), which affects her motor function, a cleft palate, and one kidney.
Rebecca Roche, a friend of Charlee’s parents Natalie and Steve, told Kings News: “Natalie is not only Charlee’s mummy, but her carer, nurse, PA, therapist, physio (all carried out without much sleep), and a huge advocate for her daughter.
“Natalie had us friends in tears when she was talking about a device that would allow Charlee to express her needs, thoughts and feelings for the first time.”
Natalie was describing Eyegaze, a state-of-the-art device that would allow her daughter to communicate using her eyes.
To raise money for the device, around 80 people came together for Charlee’s Barbecue and Sponsored Walk on Saturday, July 13, which raised more than £15,000.
Natalie and Steve are now asking for further donations to help them hit the £20,000 target needed to purchase Eyegaze and give Charlee a voice for the first time.
To donate, visit Charlee’s JustGiving page.
Photo Credit: Simon Alderson
Is there a just giving page going for Natalie?