Ezra Fights SMA!

Ezra was born on the 15th October 2021, a beautiful third son to Shauna and Ronan McRory.

On the 29th October 2021, when Ezra was just 2 weeks old, his health visitor had some concerns around his movements and his low tone. Less than a week later following the quick reactions of his Health visitor, his Paediatrician and Neurologist; genetic testing was completed and Ezra’s Mummy and Daddy Shauna and Ronan received the life changing, heart-breaking news. Ezra 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 in a country where there is funding for treatment for which we will all be so truly grateful for. Ezra received 4 loading doses of Spinraza initially after his diagnosis and on 8/3/2022 he received a very new Gene Therapy called Zolgensma. A one off dose treatment that has been proven to replace the gene Ezra is missing. However ultimately it is not a cure and there is yet to be any long term evidence available, but at least a glimmer of light and hope in what can only be described as an emotional rollercoaster of a journey to date for Ezra, his parents, siblings and wider family.

Alongside the treatment Ezra has received, he will need intense frequent therapy especially over the next few years as well as specific equipment and aids to give him the best chance at life. It is said that receiving Zolgensma without Specialist therapy is like going to war without weapons!!

We appreciate the NHS can only do so much, and that is why we are launching this Fundraising page.

The money raised will go towards the following;

Private physiotherapy sessions: - Whilst Ezra will receive some physiotherapy sessions with his local community team, it will not be enough. It will take all of the work to help build up Ezra’s mobility and strength as much as possible. There is considerable cost involved with this, as typically private sessions start at £70 per session.

Intense Therapy courses - These are about £1,000 for a week's course and Ezra will have to travel for these to locations; Mainland UK and Italy being the closest. From contact with other families and in doing our own research, these really are a fantastic way to make progress with motor skills.

Hydrotherapy – a highly effective form of therapeutic exercise. It allows a sense of freedom and a greater range of movements and strengthening, which the weight of the water gives you.

Additional equipment - Whilst we get some equipment funded, there will be special additions we want for him and will need to fund ourselves, which has the potential to be very costly. We also need to purchase home physio equipment to be able to help him practice certain positions comfortably & supportively.

We will also be raising money for the charity SMA UK and the Royal Victoria Hospital Belfast.

SMA UK have been a fantastic support and are an amazing charity who are advocating on behalf of the SMA community on issues such as new-born screening for SMA and raising awareness of this rare genetic condition. They support and offer resources to families who are affected by all types of SMA.

We will be eternally grateful to the NHS, to the Paediatric Neurology Team RVH and our local community Team.

To the doctors, nurses, therapy staff, politicians, family, neighbours, friends and the general community who have sent messages, said prayers, sent us their thoughts and positivity, it has meant so much to us and given us such comfort in the hard days. Thank you for taking the time to read through Ezras journey and any donation, no matter big or small will be greatly appreciated.