I made a promise to myself last year that every October i would run 100 mile for a charity or a family close to my heart to raise a few pound for them. So i will along with my Brother Michael will run 100 mile each over the month of October for Ezra McRory.
This wee man has been through the mill at such a young age, his Dad Ronan is a cousin of mine and also a great friend.
I want to help the family by raising money for Ezras treatment for the long, winding bumpy road ahead.
This is Ezra's Story, a little warrior.
Ezra was born on the 15th October 2021. At just over 2 weeks of age he was diagnosed with Spinal Muscular Atrophy (SMA) Type 1; a rare genetic condition that is a degenerative neuromuscular disease causing muscle deterioration due to the loss of motor neurons. SMA Type 1 severely restricts a child's ability to move and is fatal if left untreated due to breathing difficulties/medical complications. SMA Type 1 can effect a baby’s movement, eating, swallowing and breathing.
Thankfully we live in an era of modern medicine and Ezra was able to receive 4 loading doses of Spinraza initially after his diagnosis and on 8/3/2022 he received a very new Gene Therapy called Zolgensma. Ultimately, these are not a cure but give so much hope to Ezra’s family for his future.
Ezra requires regular hospital check ups, intense frequent therapy which will be ongoing over the next few years as well as specific equipment and aids to give him the best chance at life.