We are fundraising for urgent house adaptations for our son Sidney, who has SMA (Spinal Muscular Atrophy) type 1. Sid has grown so much over the last year and unfortunately we are now at crisis point with getting him up and down the stairs safely. We are fundraising to build Sidney his own accessible bedroom and wetroom and through floor lift so that he can access the whole house independently and safely.

Sid was born with a rare genetic condition called SMA. Sid has the most severe form of the condition, type 1. SMA is a muscle wasting degenerative condition which if left untreated is fatal. When Sid was diagnosed we were told to go home, to love him, and to make memories, as it was unlikely he would survive long.

Sid has defeated all the odds and in a few weeks time will be celebrating his 5th birthday. He continues to thrive thanks to modern medicine and a lot of hard work and determination. At 4 months old, Sid received a life saving gene therapy drug called Zolgensma, at the time the most expensive in the world at £1.8 million. He was one of the first babies in the UK to receive this drug, which saved his life and stopped the progression of the disease. He then was part of a clinical trial for a secondary drug in Barcelona and we flew as a family to and from the hospital there every 4 months for treatment. But these drugs are not a cure, and the damage that has been done remains. Each day is a battle to maintain his mobility and where possible to try and gain muscle. To say we have been on a journey would be an understatement!

During the past 4 years as parents we have worked tirelessly to give Sid what he needs. From equipment such as wheelchairs and standing frames, to therapies including physio and hydrotherapy. All of this hard work has paid off and Sid is doing incredibly well. He no longer relies on a ventilator to breathe, and no longer needs a tube for feeding. He enjoys a great quality of life and is now attending mainstream school. His mobility continues to be a real struggle but otherwise he is quite frankly, a miracle.

This success hasn't come without some really tough times, which we have always overcome. But now we are at the foot of what feels like an insurmountable mountain. Sid has grown A LOT. He has gained a lot in weight and in height, and sadly his mobility hasn't kept up with this growth. His muscles continue to grow stronger but not as fast as his growth. And so we are really struggling to get Sid safely around the house. It has become dangerous both for him and us, something which we discovered for ourselves this past year with Sid falling from a toilet and breaking his arm and by both of us parents slipping discs in our backs. Sid currently weighs over 25kg and measures over 110cm tall, and he is wearing aged 9 years sized clothes. House adaptations have become critical.

Financially we have totally maxed ourselves out now. We moved house to one that could be adapted as our previous house wasn't suitable for a through floor lift and could not be extended. Our new house has the potential to be extended and we took as much equity out of the house sale as we could for the extension. However, what we have come to realise is that the space that Sidney will need is a lot bigger than what we had originally expected. We also hadn't factored in just how big the through floor lift is, and the fact that for insurance purposes we need to allow 1.2m either side of the bed. The space that Sid needs is much bigger than we ever realised, and therefore the cost of the building work is a lot higher.

The target for this fundraiser is high. To be honest it feels unreachable at this point in time. But we are once again digging deep, staying strong, and keeping good faith that with a little bit of hard work and determination that we will reach our target and give Sid a space that is not only accessible for him but more importantly, one where he can feel safe.

We have architect drawings in place, we have submitted for planning permission - we just need to find the money to make this happen.

If you, or your workplace, or any group or association you are part of are looking for a charity to support, please consider Sidney! Or perhaps you are considering running a 10k or half marathon or fancy doing a skydive? Please let us know as you can set up your own fundraising page for Sid. It is quick and easy to do. Sid's funds are raised and safeguarded via Tree of Hope, who are a registered charity, and therefore we are able to claim Gift Aid and this also means it's easier for businesses to donate too.

Please, if you can, donate. Any amount is greatly appreciated, however small. And if you aren't in a position to donate, please share, share, share! A share is so very important. Just keep sharing. We just hope that we can make this happen as soon as possible for Sidney. Let's get Sid the lift, bedroom and wetroom he deserves!

Thank you so much for reading

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, they will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.