We were particularly struck by this inspiring story of Rett syndrome support from Ireland. It illustrates how one family faced the challenges of obtaining costly and timely scoliosis surgery for their daughter who has Rett syndrome. Their child was on a waiting list for surgery at an Irish hospital for more than a year, so the parents sought Irish government funding to have the surgery performed at a hospital in the UK.
In this first article the impassioned parents talk very specifically about the rigors of Rett syndrome and scoliosis in particular. Note also the quote from Ron Overton from the UK Rett Syndrome Association in support of this needed surgery. This second article tells how a kind-hearted businessman who heard of this need anonymously pledged €100,000 to send this girl to the UK for the life-saving scoliosis surgery.
This story shows how building awareness of the rigors of Rett syndrome can lead to help from unexpected places. Asking for help is not always easy, but this situation truly illustrates that it can be worth the challenges. Kudos to the Kellehers for having the courage to ask for help, the UK Rett Syndrome Association for providing their words of support, the media for telling the story, and finally to the anonymous Dublin businessman who pledged to make a real difference in one girl’s life. Best wishes to Ann Marie for a full recovery from her surgery.
Hopefully this will encourage others, as it has us, to share their personal stories via the media. There’s no question that awareness is a vital first step to making a real difference in the lives of those with Rett syndrome.
Greg and Janine
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