Single Carer Heads Up UK Charity Following Birth Daughter’s Diagnosis with Wiedemann-Steiner Syndrome (WSS).
Here’s the remarkable journey NFA North carer Alison has been on the past year.
Alison Smith has been a single foster carer with NFA for 5 years and has a long term placement. She recently found out that her birth daughter has a very rare genetic condition called Wiedemann-Steiner Syndrome (WSS). WSS can cause development delay, feeding challenges, short stature and low muscle tone and is so rare there are only 238 confirmed cases in the world.
When her daughter was diagnosed, Alison realised there was a distinct lack of information to be found about the condition, and what information and research papers she could find were very medically based. She explained ‘’When my daughter was first diagnosed I did what most people I think would do and went to Google. After searching online, I realised how little information there is out there for parents, and the little that I found was far too medical for the average person to understand.” She came across an American group on Facebook where people discussed the condition, but still the conversation was too advanced for easy interpretation.
This motivated Alison to set herself the challenge of raising awareness of the condition and set up a support group where people could help one another and share information freely. She found out where others with the condition were, arranged for doctors from Great Ormond Street Hospital (GOSH) to attend and organised a meeting. Alison explained “There was a lot of planning involved, many sleepless nights worrying if anyone would turn up, if anyone would come”, but she needn’t have worried. In total, over 70 people came from across the globe to the meeting and it was a huge success. One family commented, “The day was relaxed and parents felt at home and as though no one was staring at their children and no one was judging – we are usually prepared for stares, but that did not happen here.”
Following the success of the event and the incredible feedback she received, Alison worked closely with GOSH to produce information packs to be given to all parents of children with WSS, which explained more about the syndrome in layman terms. She has since gone on to set up the first UK charity for Wiedemann-Steiner Syndrome, shortly due to be named National Wiedemann Steiner Syndrome Society.
Not only has Alison done all this whilst caring for her daughter, but she’s continued with her fostering journey and has had her current placement for 3 years. She also works full time at a school and is looking forward to organising the next meeting in February 2018. Alison is truly inspirational and we’re privileged to call her a member of the NFA family.