Brittle bones child from Belfast “like one of the X-Men”

Child with red glasses smiling
25 January 2019

A six-year-old with brittle bones travels 1,300 miles from Belfast every year for life-saving treatment.

Eva, who has osteogenesis imperfecta type three, travels to Sheffield Children’s Hospital to be treated. When she was little, even sneezing could cause her thin bones to fracture, but Eva still loves music, dancing and going to school.

When Eva was six weeks old, her mum and dad were able to hold her for the first time in the hospital’s High Dependency Unit. Over the years since she has had surgery to fit rods in her legs to help straighten them as well as receiving ongoing treatment with children’s bone and dental teams.

Eva pays a visit to the Sheffield Children’s specialist metabolic bone disease service with her mum and dad for three days every twelve weeks.

Her mum said: “Everything was unknown before we came here. People were so frightened because Eva’s condition was so severe. The team at Sheffield Children’s are really superb, they taught us how to manage it. This is the best place to come; it’s where the experts are.

“Eva is like one of the X-Men, there was a 1 in 10,000 chance of this mutation happening during pregnancy. There was no history of it in the family.”

At Sheffield Children’s Hospital the specialist metabolic bone disease centre offers a world-class service for children with a wide range of conditions including osteogenesis imperfecta and osteopetrosis, or ‘marble bone disease’. Treatments include medication occupational therapy and physiotherapy, orthotics and referral to specialist surgical services.

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