The family of a seven-year-old girl from Co Tyrone believed to be the first person in Northern Ireland to be diagnosed with a rare, incurable, and life-limiting disease is seeking help in the US.
There is no cure or treatment for the "cruel" disease which has seen Sara's eyesight rapidly deteriorate and her balance affected. The youngster attends physiotherapy and occupation therapy in preparation for life in a wheelchair. "Planning for the future is very hard, especially when talking about Sara as an adult. Sara's spoken about having kids but I don't know if she will get the chance to be a mother. I wish we had a crystal ball. For now, it's a guessing game.
Genetic testing was done and in July last year, Sara was diagnosed with Leukodystrophy. Agnes, from Hungary, and Claudio, from Portugal, have been advised to only speak one language at home to improve Sara's speech. "She cries sometimes because she wants to be part of certain games but she's surpassing all our expectations and doing things I never thought she'd do like climbing on climbing frames."
"Dr Wolf will be able to tell us what stage we're at and where Sara will be in five or ten years time. It's very isolating being the only family in Northern Ireland going through this. It's hard to talk about our fears.