The Roberts Family
30 May 2017
Steph and Rich Roberts tell us how SMA Support UK made a difference when their son Henry was diagnosed with SMA. They are now busy raising funds so other families can receive the same support:
In the early days of diagnosis, you honestly sit there and have 1 million questions, what will life be like, when will he deteriorate, how will we cope, what help is available, how do we get the right support?
Our SMA Support UK Outreach Worker was excellent in making us feel ‘OK’ to ask and that it was totally normal to feel how we felt. We cried with her, we laughed, and started to put a framework together on how we would move forward.
Once we felt we were coping better, we wanted to fundraise to help the charity, that in itself was very cathartic.
Our first fundraiser was the June Wolf Run, it was actually a way of not only raising funds but also letting our wider friends know about Henry. We raised over £3000 but we want to do more so we’re looking at a ball and a golf day.
We’ve appreciated the support we have received from Caroline, in particular; she was able to come to this local event, really making us feel that we were part of something. Also, the thought that we are in some way helping other people that are going through the same challenges makes the fundraising worthwhile.
We plan to continue to help in any way we can and look forward to taking part in organised fundraising events and organising our own.