Being there for families, from childhood to adulthood

21-year-old Josh lives in Hertfordshire with his mum, Gill. His older siblings, Niamh and James often come to visit too. We spoke to Gill to learn more about how Family Fund had been there for her family, through Josh’s childhood to today.

‘Tell us about Josh‘ 

“Josh has a fantastic personality. He loves singing and dancing. If there’s a karaoke machine, he’s using it! He loves his iPad and his games. He’s very loud, loves his friends and lives life to the full. 

“Josh has Down’s Syndrome, global developmental delay and tracheomalacia. Tracheomalacia affects his throat, so I have to watch him eating as sometimes he can overfill his mouth and is at risk of choking. He can communicate with people, but will use Makaton if people can’t understand him. He does however have a full understanding of what people say to him (when he wants to!). Josh can struggle walking, he walks very slowly and gets tired very easily.

“I’m Josh’s main carer. I cook all of his food, which he can eat himself quite happily, but I do have to be there to ensure he doesn’t choke. He will have a bath that I will remind him about and run it for him, and I will brush his teeth for him too. Josh does like his independence and his own space though, and I feel it’s important for him to have that too.”

‘How did Family Fund help you in Josh’s childhood?‘ 

“I feel very lucky that Josh has received grants from Family Fund over the years. Family Fund has granted us items like an iPad and a Nintendo Switch. These are his way of communicating. He FaceTimes his friends, and plays his games with his friends on the Switch. I don’t know what I’d have done without it. Josh would’ve gone without it, because we simply can’t afford.”

‘What happened when Josh became an adult?‘ 

“After school, Josh went to college for two years, but once he left, there was nowhere else to go.”

“Suddenly I felt more vulnerable than ever before. You get more help when they’re smaller than when they’re bigger, but they need more help than ever before when they’re bigger. Josh can’t have full independence, but he doesn’t need me attached to him all the time.”

“I’m so lucky that there is a local group that he can attend three times a week, whilst I work. But this group costs money and I have to self-fund. I don’t get any respite, but Josh is very happy, and that’s important to me.”

‘How has Family Fund helped your family into Josh’s adulthood?‘

“Josh had a television in his bedroom that broke recently. I keep it in his bedroom for him because it’s important that he has his own space to call his friends. He often calls his friends on FaceTime, and they talk about what’s on the television together, or they’ll play games together. When his television broke, he was beside himself and really upset.”

“Family Fund gave us a grant for a new television. I was so pleasantly surprised, because all the other support that we once received for Josh disappeared when he became an adult.”

“I kept it as a surprise for him. He walked through his bedroom door and it was waiting for him, and he was over the moon. He was back to listening to music in his room, dancing, and calling his friends to talk about it. Family Fund has given Josh an opportunity to feel like he’s part of a friendship group, because it’s how he communicates. It’s been a godsend.”