After a problem free pregnancy and birth, little Ezra was admitted into intensive care for a nasty cold at just 5 weeks old, needing a life supporting ventilator to breathe for him.

When we finally got him home after nearly a month in hospital, we realised Ezra could no longer grasp, move his legs or hold up his head. He was diagnosed with type1 SMA, the worst form of a devastating progressive disease that means the messages from Ezras brain cant get to his muscles, including the muscles for breathing and swallowing. We were told that, if we were lucky, he might make it to two years old,

Therefore Ezra is now peg fed and has a ventilator whenever he sleeps. He finds coughing difficult so has a machine to do it for him and a suction machine to suck up the snot- he hates it! He can not sit up- hold his head or move his legs. His cognitive function and the muscles in his face are not affected, He was in intensive care on life support 3 more times throughout his first 8 months of life. Ezra is clever and remains happy and smily through it all!

A ray of hope came to us, unusually through a drugs company! As yet unlisenced by the NHS, a new drug that had been very succesful in trials in America was avilable through an open access progranme which the Evelina childrens hospital managed to get Ezra on. He has an injection into his spinal fluid 4 times a year. Since starting the drug programme when he was 4 months old, Ezra has not deteriorated- he can hold toys and pass them from hand to hand, he is beginning to gain some head control and can cope with colds at home on his machines.

Ezra needs a new carseat, one that supports him in the right way for his breathing and that gives him good head and trunk support.

He loves to play and discover like all one year olds, the toys he can access with such a light touch are hard to find, sensory toys are very expensive.

We believe in miracles and have faith that our darling Ezra is at the beginning of a long and fulfilling life- though not without challenges that are often expensive to solve!

Thank you for your help to enrich Ezra’s life,