A Brighter Future For Blake Living With SMA Type 1

Thanks for taking the time to visit Blake’s JustGiving page.

This is Blake’s story.. 

Blake was diagnosed with a rare neuromuscular condition called Spinal Muscular Atrophy Type 1. SMA is a genetic neuromuscular condition that causes muscle weakness and wasting due to the loss of motor neurons. It is a degenerative disease which if left untreated is fatal. Historically, most babies with SMA Type 1 do not reach the age of 2. 

At just 4 weeks old a few family members had their concerns about Blake’s breathing. Being the new addition to the family, no one likes to worry or panic first time parents. Blake’s nanny is actually a nurse and recorded Blake’s breathing to show the Dr at her work discreetly, to be told his breathing was completely normal. When Blake turned 6 weeks old, the health visitor came round for their standard checks after a baby is born. He was weighed, could clearly see Blake’s breathing, had an head preference to the right and that he was completely floppy. The Health Visitor signed off Blake’s red book saying he was a healthy 6 week old. Just two days later Blake was struggling to breathe, wasn’t taking his bottle and not having wet nappies. This is when we knew something wasn’t right and we took him straight into our local A&E. It wasn’t a long wait until Blake was taken off and rushed straight to resus. After being hooked up to machines, lines put in Blake’s arms and had an Ng tube shoved down his nose we really started to panic. After having emergency x-rays it was confirmed that Blake had a fully collapsed right lung and that he would be transferred to Bristol Children’s Hospital immediately. 

Once transferred it was confirmed that Blake had RSV. Respiratory syncytial virus can sometimes just present as a common cold in most people, but as a 6 week old baby it was a lot more concerning. Following on from this they were worried about how floppy Blake was and asked us if he had always been like this. We thought he was just floppy because he was weak from RSV but little did we know after they ran genetic testing, it was confirmed Blake had SMA Type 1 at just 9 weeks old. Blake was in intensive care by this point tackling RSV with the underlying condition of SMA which we’d only just heard of for the first time. 

Being told your newborn baby has a life limiting condition is indescribable. It felt like we were being sucked into this huge hole, one we couldn’t return from. We were silent for hours, apart from the tears streaming down our faces. Blake’s future had flashed before us not knowing if he would even make it. Reliving every fine detail of that specific day will forever haunt us. It really is unimaginable until you experience something so horrific. 

There is currently no cure for SMA, but there are now 3 different drugs available which help stop the progression of the disease. Blake has been fortunate enough to receive one of them on the NHS, Zolgensma; Gene-Therapy and is now receiving Spinraza as part of a clinical trial in Rome- Italy. Thankfully he is doing well and continues to surprise us all the time by his strength and determination, but his battle is ongoing and sadly very little aftercare is provided for by the NHS. 

The damage that the SMA had already done to Blake’s body by the time he was treated will remain, and there is still no drug to undo that damage. The motor neurons in his body that have already died are dead and there’s no way to bring them back. Our only option is to build on what remains and get him as strong as we can to give him the healthiest, happiest and most independent life we can. Following on from SMA, Blake has now developed severe scoliosis which can be controlled and managed by bracing until surgery is necessary. The certain brace we need to access unfortunately isn’t provided by the NHS at costs thousands for just the one brace which will only last 6-12 months due to growth. So the rehabilitation work will be ongoing for the rest of his life. It is left to us parents to research treatments, clinical trials, specialist equipment, orthotics and therapies, not forgetting we also fund these privately. We are out of pocket for something we shouldn’t have to take care for ourselves alone, which is why it’s important for us not to give up with the efforts of fundraising.

We are raising funds for:

Intensive weekly physiotherapy.

A 3 week intensive physiotherapy programme at the world renowned NAPA London. 

SwimLab Lanzarote intensive water and land based therapies including TREXO.  

Privately made custom orthotics which unfortunately the NHS cannot always provide for Blake. 

Home adaptations for making the house a safe wheelchair friendly environment for Blake.

Specialist equipment including a wheelchair, a simple life changing object that gives Blake his freedom and independence, which again isn’t provided for on the NHS until he’s 4 years of age. Shocking I know! 

Thank you for taking the time to read through Blake’s fundraising page and I hope we’ve made it clear as to why we need to raise sufficient funds to help give Blake the best fighting chance at life. He deserves the world and sometimes we have to ask for help at the least expected times. You never expect something life-changing to ever happen to you and unfortunately in the world we live in, having a disability is very expensive. 

Please feel free to follow Blake’s journey on Instagram: 

@blakes_sma_journey

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