Bringing the Outdoors to Harry: A Special Garden Project

Hi, I’m Sam — mum to Harry, our amazing 15-year-old son who was born with complex congenital heart disease, including only half a functioning heart. Just before his third birthday, Harry went in for a routine bronchoscopy, during which he tragically suffered two cardiac arrests. This caused a hypoxic brain injury, leaving him with severe and complex medical disabilities.

Over the last 12 years, Harry has battled through immense challenges with incredible strength. His dad Andrew, sister Caitlin and I have fought right alongside him every day. Harry was left quadriplegic, now ventilated 24/7 via a tracheostomy, severe scoliosis and lives with complex epilepsy and other medical conditions. He is unable to communicate verbally or physically but answers yes or no questions by blinking. Despite it all, he’s a cheeky, bright, and joyful teenager — has full understanding, completely age-appropriate, an amazing personality, and very loved.

Harry hasn’t been able to attend school for the past 16 months, as they are currently unable to meet his medical needs. On top of that, his wheelchair no longer supports his body properly due to severe scoliosis, causing him pain, discomfort, and breathing difficulties when seated. While we’re working with the local wheelchair service to find a solution, it’s proving to be a long and complex process.

Right now, we can just about manage to get to medical appointments at the tertiary hospitals he attends , but Harry is otherwise unable to leave our home. It breaks our hearts, especially because he’s always loved being outdoors. We have wanted to give Harry a suitable, accessible space outside — and had been saving for it — to create a, sensory-style garden with an area for us all to sit together where Harry could enjoy the sun carefully, fresh air, and time with us outside in his home.

We had hoped to build a garden with:

- A glass-topped pergola to protect him from sunlight, and keep him sheltered, as well as help with his breathing sensitivities

- A smooth, even, wheelchair-accessible path, all the way around the garden

- A sensory-friendly space where Harry can feel calm, stimulated, and connected to nature

- A space we can all enjoy together as a family in the summer months and on warmer days.

Unfortunately, due to an unexpected job loss last year, we had to use all of our savings just to get by and meet Harry’s essential medical needs. The cost of powering his equipment alone is significant, and with rising living costs, saving again for the garden has become a real struggle.

We’ve looked at whether moving would be a possibility, but nothing we’ve found can accommodate Harry’s needs the way our current home does — and the financial burden of moving is simply beyond our reach.

Harry is life-limited, and the truth is, we don’t know how much time we’ll have, we are grateful for everyday we have with him. What we do know is that we want to give him the best possible quality of life- this includes comfort, peace and joy — especially in his own home.

We recently asked Harry what he would love most in a garden, and through his responses, he told us he’d love to sit outside with us in the evenings, to have a space he can explore, and something more than just the uneven patch of grass we currently have.

We hate to ask, but there is no other way than ask for help with this project. We cannot access a grant due to us both working- Andrew full-time and myself part time around Harry’s needs,

If you would like to contribute — no matter the amount — we would be so grateful. Your kindness would help us give Harry a peaceful, accessible outdoor space to enjoy the world around him, feel the breeze, hear the birds, and most of all, just be.

Thank you for reading Harry’s story, sharing, and supporting our garden project for Harry.

Sam, Andrew Caitlin & Harry