We are parents to a little boy called Fletcher. When Fletcher was born he was so with high hopes and expectations however to reach such aspirations has since been asked to conquer a rare neuromuscular condition called Spinal Muscular Atrophy (SMA). By doing this challenge we hope to raise funds to provide Fletcher with all the support and opportunities to live a long and fulfilling life.

On the 13th October 2020 aged 13 months Fletcher was diagnosed with SMA. SMA affects the lower motor neurons found in the spinal cord. For these nerve cells to remain healthy our specialised genes must produce enough SMN protein. Due to a faulty SMN1 gene Fletcher is unable to produce enough of the SMN protein needed. This means his nerve cells have started to deteriorate restricting the delivery of signals from the brain to his muscles making movement difficult causing progressive muscle weakness and loss of movement. This will affect his crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing.

At 15 months old Fletcher is as eager and excited as the next to be an ambulatory mischievous young boy. With the help of our family, friends and the communities around us we hope to provide every possible opportunity of an amazing quality of life. All money raised will go towards equipment, treatments, physiotherapy and home modifications. He is a shining light that brings joy to us all. We are eternally grateful for any donation that will support him on his journey.

From Sunday 25th July myself (Dad), Fletchers uncle and cousin will by cycling from John O’ Groats to Lands’ end a total of 910 miles. We are however adding one element which is completing this challenge in just 7 days. This will require us to cycle 130 miles (on average) a day.

We may not be fully aware of all the challenges that lie ahead neither fully understand the preparation that is required nevertheless training has begun and are determined to ensure nothing will stand in the way of providing Fletcher with the quality of life any young child deserves.

As of july 2019 the NHS began using a drug called Nusinersen/Spinraza the first (and currently, the only in the UK) available drug treatment for SMA. This drug attempts to increases the SMN protein providing Fletcher with more of the protein his motor neurons need to give his muscle a chance of moving. There is a new pioneering much more advanced treatment called Zolgensma. Zolgensma is a gene therapy medicine for treating SMA but as it stands is currently only available in the USA and comes with a large price tag. We are hopeful and thankful that Nusinersen is available to us yet remain hopeful that one day it is possible that Fletcher receives all possible medicines available.

Help us raise awareness of SMA, learn about some of the amazing charities that support rare diseases and for more information on SMA follow Fletchers journey as an SMA patient @Fletcher.LivingwithSMA