Blake’s second chance at life

We do not even know where to begin.

Who would have thought when Blake got admitted to hospital 19/09/21 with a fully collapsed right lung & tackling RSV at 6 weeks old, that 3 weeks later he was also diagnosed 6/10/21 with Spinal Muscular Atrophy (SMA Type 1). The most aggressive and deadly form of the disease. Without treatment, Blake wouldn’t see past his Second Birthday.

We are heartbroken.

SMA Type 1 will affect Blake’s ability to crawl, walk, sit up, control head movements and damage the muscles used for breathing & swallowing which is fatal.

Catching RSV was a blessing in disguise because if he didn’t catch this, it would have been months until we knew something wasn’t right with Blake.

We are fortunate enough that Blake will receive Zolgensma, a groundbreaking gene therapy that’s reportedly “The most expensive drug in the world” costing £1.8 Million. But with regret to say, this is no cure & our lives will be changed forever.

Zolgensma without physiotherapy is like a war without guns. Blake will need extensive physiotherapy/ equipment & hydrotherapy 3+ times a week to get the very best results.

This could be the difference between Blake walking and not walking.

We are raising money to give Blake the best chance at living a normal life.