Noah is our beautiful 5-year-old son, who lives with Lowe syndrome — an incredibly rare genetic disorder affecting around 1 in 500,000 boys. It affects multiple parts of his body, including the eyes, brain, kidneys, muscles, and bones, resulting in complex medical and developmental needs.

Noah's condition has been complex since birth. He was born with dense cataracts in both eyes. Though he underwent surgery to remove them, he unfortunately went on to develop glaucoma in both eyes. An MRI scan also revealed congenital brain abnormalities, and he lives with hypotonia (low muscle tone), which deeply impacts how his muscles and bones function. Because of this, Noah has Global Developmental Delay and Profound and Multiple Learning Disabilities. He is completely non-verbal, unable to walk or weight bear, and relies on us for all mobility, transfers, and daily physical care.

Noah also battles Sensory Processing Disorder (SPD) and a rare platelet bleeding disorder. Because Noah has zero awareness of danger, he frequently head-bangs and sensory stims. With his bleeding disorder, any minor bump to his head carries a critical medical risk of severe bruising and internal bleeding.

At home, the NHS provided an enclosed specialist profiling bed specifically to protect him from head-banging and keep him safe. This bed is essential for keeping him safe, but it is massive, heavy, fixed in place, and simply cannot travel with us.

When we want to go away, we have no safe sleeping arrangement. Ordinary travel cots or standard beds are completely unsafe for Noah’s complex needs. Noah has started having respite stays at our local children’s hospice, where an enclosed safety bed is used to keep him safe. We desperately want him to have the same opportunity to safely stay away from home with his family.

We are fundraising for the Murray Medical Professional Model of the portable Safety Sleeper, which costs £3,990. We have had to choose this specific specialist bed because standard enclosed beds or travel tents bought on Amazon simply do not have the heavy-duty, impact-absorbing medical padding required to protect him from life-threatening head injuries. Furthermore, this professional model features specialized access ports for tubes (as Noah has a Mic-Key button) and is fully compatible with mechanical hoisting. As Noah is getting heavier, hoisting will be an absolute necessity for both home and travel.

We have already saved £600 ourselves towards the cost. We approached two other charities for help, but unfortunately, our applications were completely rejected solely because Noah already has his fixed safety bed at home. This has been utterly heartbreaking for us. These charities are failing to see that a fixed home bed does not provide a travel solution, leaving us feeling completely trapped at home.

It is only fair that Noah gets to experience the world outside our house—family holidays, overnight stays, and precious milestones alongside his two sisters Kiera and Mia, just like any other family.

Every donation, no matter how small, will bring us one step closer to unlocking the world for Noah. Thank you so much for taking the time to read Noah’s story and for helping us give him the chance to make memories, explore the world, and enjoy his childhood to the absolute fullest.

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