Run for Riley!

Let me introduce you to Riley, he is a wonderful one year old boy with an infectious smile. His parents are my cousin Aden and his wife Gemma. Gemma is a Health Care Assistant nurse and Aden is a Student Learning Coach, their lives are dedicated to helping others and now they and Riley need us to support them.

At just 4 months’ old, Riley was diagnosed with Spinal Muscular Atrophy (SMA) Type-1; the most severe form of SMA with the worst prognosis and life expectancy.

SMA is a rare genetic neuromuscular condition causing progressive muscle wasting and weakness, leading to a lack of movement. SMA also affects breathing and swallowing; crawling and walking ability; and arm, hand, neck and head movement. The worst aspect is that currently there is no cure for SMA.

There is a 1/10,000 chance of being born with SMA. Unfortunately, Riley was one of those unlucky few.

After his diagnosis, Riley spent 6 weeks in ICU at Great Ormond St. Hospital, fighting every day to stay with us. This was a such difficult period for Aden and Gemma and the rest of Riley’s family. Thankfully, Riley pulled through and made it home.

The priority now is ensuring Riley has all the equipment needed to live his life to the fullest.

Currently, Riley is using a feeding tube, takes daily medications to help improve his motor functions and hopefully prolong his life. He is on a respiratory machine when sleeping to aid his breathing; has physiotherapy sessions 3 times a day; and regularly has oral and nasal clearing as fluid builds up quickly.

The devastating reality is that the cost of purchasing even the basic equipment needed for Riley and paying for extra treatments for him are not covered by the NHS.

So, this is where you come in, I am running the London Marathon in April 2023 to help support Riley and his family and I’m asking you to dig deep. I appreciate times are very tough now, but with your support we can:

Purchase new essential equipment to enable Riley to leave the house

Purchase specialist equipment to improve Riley’s quality of life

Fund ongoing physiotherapy and hydrotherapy sessions not funded by the NHS

Help to allow the family to create memories

Donate money towards SMA research

Thank you, any money donated will make a real difference to this wonderful family.