Our beautiful son, Jack William Dorrington was born 25th May 2017.  On the 12th July 2017 our world was torn apart when Jack was diagnosed with SMA Type 1, an incurable and fatal genetic disease.  Unbeknown to Chris and I, we were both carriers of a defective gene that causes SMA.

SMA is the leading genetic killer of infants and toddlers, yet awareness of this disease is surprisingly low, we certainly had never heard of it before.

Our goal now is to enjoy every last minute we still have left with Jack but to also help raise as much money and awareness to help raise as much money and awareness to help beat and cure this cruel disease.

SMA is currently incurable

1 in every 6000 births is affected by SMA

1 in every 40 people is a carrier of the defective gene that causes SMA

The child of two carriers has a 1 in 4 chance of developing SMA.