Arlo has a rare genetic neurological condition called Hyperekplexia, a startle disease which means he goes stiff and can’t breathe. In two and a half years, Arlo and his mummy, Becca, have spent just six weeks at their home.
“When Arlo was born, I expected to have a baby and go home,” said Becca. “Currently, we have been in hospital since November 2024, and I can’t wait for the day that I can show Arlo something other than these four walls.
“I am a single parent and spending our lives in hospital, not knowing what the future holds, is incredibly difficult.”
At the time of Arlo’s diagnosis, Becca and Arlo were supported by our Clinical Nurse Specialist and our Family Support Worker in Hospital. Our team worked alongside the NHS to support the family in living as fully as possible, from the moment of diagnosis to the present day.
“Arlo spends most of his time in a cot and has many any other conditions that affect his mobility, his speech, his eyesight, the way he eats and how he sleeps,” said Becca. “The hospital medical staff are great, but the Rainbows team in hospital are a godsend. Just to have that extra support from that specialist team makes all the difference to us.
“Without them I would struggle to cope, and it is so comforting to know they are there. They provide emotive support when I feel the world is against us, and they help me with practical things that are often too overwhelming.
“Like most children, Arlo absolutely loves music and the Rainbows Music Therapist comes to visit him. I would never have imagined we would be able to have access to something so amazing in hospital. These small things make such a difference to us; I had never seen Arlo as happy as he was when he had his first Music Therapy session. Now he is obsessed with musical instruments, and he loves a good sing song, even though he can only make noises.”
Becca said she has grieved the motherhood she didn’t get, and won’t get, to have. Arlo has never had a birthday or Christmas at home, and they can’t go to parks, farms, soft plays, birthday parties and play groups.
“What we can go to are coffee mornings, organised by the Rainbows nurses, in hospital,” said Becca. “This is such a normal thing for me to do, and it is incredible to meet other parents. The coffee morning is something I can look forward to and it gives me a moment to breathe.
“I don’t know what the future looks like for Arlo, he is a man of mystery. In the last 18 months he has had 40 surgical procedures, and he frequently stops breathing. He has so many wires and tubes but he keeps smiling, he is such a happy child. I take every day as it comes, knowing each day could be his last. We spend so much time cuddling and that is one of our favourite things.
“Rainbows has definitely made my life a lot easier, and it is comforting to feel less alone.”
I had never seen Arlo as happy as he was when he had his first Music Therapy session. Now he is obsessed with musical instruments, and he loves a good sing song, even though he can only make noises.