SMA awareness for Sol-John memorial and Willow

Hi everyone

Myself, Sol and some family and friends are going to be doing a 56mile cycle around the Isle of Arran on the 15th of July in memory of what would have been Sol-John’s 10th birthday. 

 Our beautiful baby boy Sol-John who was born on the 15th of July 2012. Sadly after a perfectly normal pregnancy Sol-John was showing signs of muscle weakness, breathing difficulties and struggled to feed properly at birth. Tests were carried out and we found out that he was affected with a genetic condition called spinal muscular atrophy (SMA) type 1. 

SMA is a rare neuromuscular genetic disease. SMA progressively destroys motor neurons—nerve cells in the brain stem and spinal cord that control essential skeletal muscle activity such as speaking, walking, breathing and swallowing leading to muscle weakness and atrophy.

 Devastatingly back in 2012 there was no treatment for SMA and our gorgeous little boy passed away in our arms at just under 6 weeks old.

Both myself and Sol are carriers of the defective gene so have a 1 in 4 chance of having a baby with SMA with each pregnancy.

1 in 40 of the population in the UK carry the altered gene but few are affected by both parents carrying the gene coming together and both passing on that altered version. It is relatively rare but some of you reading this may well be carriers and potentially passing it on to your children but fortunate enough to slip through the very sticky net.

There is currently campaigning for testing at birth in the UK (standard in the US) but it seems a big ask for a test costing approximately £3! A drop in the ocean considering it is a life long degenerative condition that requires life long care and medical support.

Our worlds were rocked once again when our beautiful niece Willow was recently diagnosed with SMA type 2 at 14 months old. So any money we raise will be going to our amazing niece Willow to help fund specialised equipment and treatment.

So please in memory of our gorgeous boy ans to help our beautiful little Willow we will be so, so greatful for any donations. 

Thank you ❤️