Hello Everyone,

As most of you will be aware, mine and Jack’s little girl Sienna, was sadly diagnosed at 6 months old with SMA Type 1, after struggling with many physical delays and many hospital and GP trips she finally got her diagnosis in May 2022.

Jack & TJ’s Sister Julia has SMA Type 3 and was diagnosed at a very young age and unfortunately at a time where research was not a big thing, SMA was very unknown but came with a very short life expectancy and there were no treatment options.

We were informed that unfortunately Siennas muscle disease comes with a 2 year life expectancy without treatment.

There is no cure sadly for SMA. But there are 3 treatment options available to halt the disease that are funded by our amazing NHS.

We were told Sienna would never hit milestones, such as holding her head, sitting, speaking, swallowing, rolling, walking. The treatment can only halt the disease where it is at the time it’s administered. However, since her trial drug in June 2022, she can now say clear words, roll, sit independently for a couple of seconds-minutes, move her arms and hold them up and her head control is amazing. We are seeing the opposite of regression, only progression!

The downside is we do not know the outcome of the trial drugs, the long term effects. And this is why we need your help to continue researching and supporting SMA to fight for a cure and fund these amazing trial drugs to lengthen life expectancy in infants & adults with an SMA diagnosis.

None of this would be possible without SMA UK, the research trials and our NHS.

All we want to do is give back to ensure that this support remains in place for other families who have been through OR are going through what we have. Raising money and awareness will also aid towards SMA being part of the UK’s heel prick for babies at birth. With SMA, the key is to get the diagnosis as soon as possible as the earliest intervention with the trial drugs means less deterioration in the body. You are practically giving a child a life by helping us raise awareness for these treatments and early intervention.

Children born now and treat at birth with the trial drug Zolgensma which Sienna received, will go on to live a completely healthy life with no mobility or respiratory issues just a diagnosis hidden beneath.. Unfortunately we did not get that opportunity with Sienna and now have numerous machines, specialists and will be life long carers for her not just parents & unfortunately have to attend a lot of hospital stays along the way and a risk of loosing her each time, every parents nightmare.

Onto the fundraising…

Me and Tj are completing a couple of separate races this year to raise awareness and funds for SMA UK ( Spinal Muscular Atrophy).

TJ is running in the SMA 7kg mascot on the 27th of April in Manchester, We are both running the Middlesbrough Ali Brown 5k on 1st June 2025, we are both taking part in the 10k at Middlesbrough on 31st August 2025. Tj is again running the Great North Run on 7th September in Newcastle and then finally the Amsterdam Marathon on 19th October 2025. This is all in aid for SMA UK.

We appreciate for everyone it’s such a hard time, £1 donation is absolutely amazing or even a share goes such a long way and will take a couple seconds out of your day to potentially save a child’s life.

Thank you so much for reading!❤️