Celia was just five weeks old when she was diagnosed with Klippel-Traunanay Weber syndrome, which affects her speech, learning and mobility.
Eight years on, she uses a wheelchair and suffers from epilepsy and learning disabilities. While Celia is a bright and sociable little girl, the early years were difficult for the whole family, admits her mother, Ruth Card.
For instance, in the first few months after Celia's diagnosis, the family met with more than 20 agencies, including nine healthcare consultants and five therapists.
"The sheer time and energy involved in attending the appointments, assessments and procedures was enormous," says Card. "Had there been an integrated service for children with disabilities and their families, Celia's early life would have been very different."
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