This week, we’d like to help a 6 year old boy from Northern Ireland who has been diagnosed with a terminal illness.
Enzo lived a normal, healthy life for the first 5 years of his life. His mum, Hayley, noticed he wasn’t running properly, and he was referred by his physio to a consultant to undergo some tests. Shortly after, Hayley received a phone call from the consultant asking her to come in to discuss the results.“What I heard totally knocked me off my feet. My little baby, my beautiful little Enzo, has Duchenne Muscular Dystrophy,” Hayley said.
DMD is a muscle wasting illness. Enzo will gradually lose mobility in his legs, and as he enters his teens his breathing and heart could be affected. There is currently no cure.
“I was in a state of shock for months…hearing your son will be in a wheelchair by age 10, and may not make his 20thbirthday hit me like a tonne of bricks.”
Shortly after Enzo was diagnosed, Hayley lost her job. So now she stays home with Enzo and is his full time carer.
Enzo doesn’t know the full details of his illness – Hayley is trying to let him live as normal a life as he can, for as long as he can.
“He doesn’t let anything stop him. He gives everything a go. When he complains about being slow in the playground, I tell him ‘So what? You’re the most amazing artist – some kids are fast and sporty, some are creative…we all have different talents.”
At the moment, Enzo gets tired very easily and struggles to walk too far or manage stairs. He has a lot of falls and his muscles get very sore and stiff, so he is in pain a lot of the time.
Enzo and his mum live in temporary accommodation provided by the council. They will be here for several years until they can find something that better suits Enzo’s needs. The house they are in now doesn’t have a bath – something Enzo’s health workers believe would help relax his muscles and relieve his pain.
As their accommodation isn't permanent, we can't buy Enzo the bath he needs but with your help, we want to go one step further and buy Enzo a hot tub for the garden. A hot tub might sound like a luxury item, but for children with DMD they are life-changing. It would improve Enzo's quality of life so much - especially as his illness begins to take hold. It would mean could have hydrotherapy to improve his mobility, and it would relieve his muscle pain.