Our first & only grandchild Alice, was born with SMA Type1, however, we didn't find out for 6 months which was too late for treatment to be successful. The unfortunate result is, Alice isn't likely to live much beyond the age of two. 

Alice has already spent a great deal of her life in hospitals and we must say a massive thanks to all those in the NHS and other carers who have helped her. 

Alice is now 1 1/2 years old and has grown into a beautiful little girl but knowing what the future holds for us all adds to the upset each time we say goodbye after visiting her. 

I wouldn't wish this dreadful illness on any child or the agony a family must endure.

If all babies could be screened at birth, they could be treated immediately giving the baby and family the best hope for the future.

The money raised will go towards helping families already suffering and most importantly research into eradicating SMA.

My son Paul Robertshaw is also doing the London to Brighton to raise money for the wonderful Naomi House hospice.

A BRIEF INSIGHT INTO SMA UK: Established for over 30 years, SMA UK are a charity that supports, campaigns and advocates so that everyone affected by Spinal Muscular Atrophy can access the best care, services and treatments, and benefit from continued research. We offer adults, young people, parents, relatives and friends emotional support, practical advice and guidance from our experienced team and provide reliable health and social care information about SMA. We also provide and distribute free multisensory toy packs for infants who are diagnosed with SMA.