Nicki Grinling

Thank you so much for your help and for reading this. Just by knowing about Friedreichs Ataxia you have made a difference - currently only 11% of the population have even heard of it!

The picture above is of Jasper (left) aged 13 with his friend Arthur.

In February this year we received the result of a DNA test that our son Jasper had way back in October 2016. It came back positive for Friedreich Ataxia (FRDA) which is a very rare genetic neurodegenerative disease that currently has no cure or treatment (apparently my husband Josh and I both carry the gene). This is the most devastating news we could have received - the most difficult thing at the time was telling our son - he was only 12 then - but he has been incredibly stoic.

We are told that some sufferers of FRDA can lead fairly normal and independent lives. The Doctor has told us that Jasper can continue sports and school in the normal way - we don’t need to molly-coddle him. Long term effects (10 to 15 years) may mean he'll need help walking, suffer from scoliosis, have diabetes, heart problems and many other issues. A paediatric heart specialist has confirmed that Jasper already has some thickening of the heart (hypertrophic cardiomyopathy)

The biggest hope for a cure lies in gene editing and we are at the dawn of a new age with regards to research in this area. Jasper is young and though there probably won’t be a cure in 5 years, with your help there could well be in 10…

We are so grateful to those who already know and who have been so supportive and kind. If you have children Jaspers age who are likely to be seeing him in the near future, it would be good if you could underplay it as much as possible - Jasper just wants to be treated the same as he always has been - after all he is the same boy he was on the morning before we even knew. You may consider it best not to even tell them but if you do it would be very helpful not to name it as googling the disease does bring up the most awful stuff which isn’t very helpful.

It’s the research in this area that will lead to a cure - please do donate if you are able and please consider Ataxia UK if you are thinking of supporting a charity.

Nicki Grinling