24 workouts in 24 hours for Harley

About Harley

Harley was born just a few months before my daughter, and since we've known each other's families for many years it was lovely to know that someone I knew was having a baby at the same time as me. Harley and Cleo were born during the Covid pandemic so we had lots of park meet-ups when the babies were little.

Unfortunately, Harley wasn't meeting some of the key milestones that he should have been at his age and suspecting that something was wrong their family wanted to investigate further. After many hospital visits and assessments, when Harley was one, his family got a diagnosis that meant their lives were going to be changed forever - he was diagnosed with SPINAL MUSCULAR ATROPHY (SMA).

SMA is a rare genetic neuromuscular condition causing progressive muscle wasting and weakness leading to loss of movement. SMA can affect breathing and swallowing, crawling and walking ability, arm, hand, head and neck movement.

SMA affects 1 in 10,000 babies and it was only 5 years ago that the first treatments became available in the UK. Unfortunately, Harley didn’t meet the criteria for the new gene therapy drug but he met the criteria for a drug called Nusinersen (Spinraza), this treatment is given directly into his spinal cord via a lumbar puncture procedure. Although this is not a cure for his SMA it will hopefully stop any further muscle deterioration and reduce complications of his current muscle weakness. He will need to have this procedure every 4 months for the remainder of his life. 

Harley needs extensive specialist physiotherapy and hydrotherapy and unfortunately, these are not available on the NHS. These therapies are extremely important to help Harley keep the little strength he has. Sadly, although the benefits for Harley will be huge, these private therapies are very expensive.

As soon as Harley got his SMA diagnosis, I've always wanted to try to do something to help. It made me realise more than ever that being able to move your body is such a gift, so I thought that a tough physical challenge would be very fitting here. I thought that raising money for Harley, to help him with his various treatments would be the least I could do for such an incredible family.

What will the fundraiser be?

On 7th January, starting at 1pm I will be aiming to complete 24 workouts within 24 hours. Each workout will start on the hour, finishing up the challenge by 1pm on the Sunday.

Where is it taking place?

T2FIT Gym, Old Coulsdon

Any donation that you can make will be supporting Harley and his care needs directly.