Alfie’s Story

Alfie O’Brien, 13, was born with a rare genetic eye condition, which means he has no vision. He also has autism and complex behavioural needs, including extreme self-harming.

In July 2021 Alfie had surgery to remove an eye and after recovering from the operation he wasn’t able to return to his special needs school.

This isolation from school routine and his friends hit Alfie hard, especially following on from school lockdowns during the coronavirus pandemic. For Alfie in particular, structure, routine and contact with his peers help with his autism and behavioural needs.

Such a difficult year led to trauma for the teenager, an escalation in self-harming and was hugely stressful for Alife’s parents Cara, 41, and Stephen, 45, who live in Liverpool. Alfie has a range of health issues. He can walk with a cane but needs to use a wheelchair for longer distances. He has a feeding tube and is incontinent. He also has global development delay, speech delay and sleep disturbances. His parents care for him full time.

Cara says: “Alfie has no vision at all as a result of the genetic eye condition Leber congenital amaurosis. He also has severe self-harming and part of that means he pokes his eyes. He damaged one eye through poking, the retina detached, and he had eye removal surgery in July 2021, an horrendous operation. He was then excluded from school, and I can’t explain how broken our family was after. He was traumatised from not being to say goodbye to his friends and he also kept saying ‘I want a new eye’.

“The Local Education Authority applied for a school within a three-mile radius and all turned him down because of his complex needs. It broke my heart to see him out of school and the most challenging part is watching your child hurt themselves. He was self-harming all day, it was relentless; head butts or kneeing himself in the head. He is quite a frustrated little boy and a lot of it is through lack of communication. He also poked his ear so badly – to shut out sensory noise – he was at risk of damaging his hearing. It is a fear of mine that he will become deaf as well as blind.”

After such a difficult year, Cara, who also has two daughters Anya, six and Lauren, 20, was determined to make Alfie smile when he celebrated his 13th birthday in March.

Searching online for special magical days out and memories for children, Cara came across information about The Sandcastle Trust which provides support and memory making trips and experiences for families living with a rare genetic condition. Our aim at The Sandcastle Trust is to help families build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience.

At The Sandcastle Trust we discussed with Cara what would help Alfie relax and have fun at home, a sensory toy or piece of equipment that could fit in with family life. We suggested the TFH Foldaway Swing Frame, which is a piece of garden equipment robust enough to take up to 140lbs and can be folded away for storage. It arrived in time for Alfie’s 13th birthday and the family were treated to plenty of birthday smiles!

“The swing is just amazing,” Cara says. “It is great to see Alfie smiling as he swings and spins! We never thought that The Sandcastle Trust would gift us this. He loves the movement of the swing and the spinning – when he was younger he loved fairground spinning cups. Our occupational therapist says the spinning action gives him a sensory feedback. Alfie also uses it as a bed, he likes to chill out in the garden and listen to the birds. We spend a lot of time at home so this swing is amazing to have. What is also great is we can fold it up when we need to, as we have a small garden.”

Cara adds: “Alfie has just started in a new school (July 2022) and although it is going to take a long time to work through his trauma, he is so happy to have a school now. We are rebuilding on the trauma with lots of cuddles, physical and sensory stimulation and we have seen a change in Alfie’s behaviour.

“He is a lot calmer and he smiles more. He has an amazing sense of humour, he is so funny, loves listening to music and he loves cuddling. We can take him out of the house a little. Before we couldn’t leave him alone with his little sister Anya, but now they cuddle all the time and even had a sleepover. Slowly, slowly we are getting there, and I hope it will improve.”