Background

Christian is 14 and lives at home with his mum, Katie and little brother Samuel. Christian was born with Downs Syndrome and Hirschsprung’s disease a condition that affects the large intestine and bowel.

Katie says; “When Christian was a tiny baby, he had to be operated on for the Hirschsprung’s disease as it really did affect him. Now, luckily, he has lots of regular checks and touch wood, he’s been better ever since.”

 

Christian’s condition and how it affects him

As Katie reflects on Christian’s condition she says; “It's not really until your child starts getting a little bit older that you start to see what a massive personality they have. But, of course, from a learning point of view and a maturity point of view, although he's now 14, he is very much eight or nine in his learning abilities.”

“In his everyday abilities, to try and do something that somebody else can, he does struggle. But if you give him time he can do them, you just have to encourage him. Give him a trampoline, a climbing frame, a football he loves his sport, but it is a struggle. He was part of a special needs sports team, but found it hard to sort out what was going on with his feet and hands and what was going on in his head, because his learning is so much slower.”

“But let me tell you about Christian, he loves to be involved. If there is one thing he’s incredible at, it’s being in front of a camera and talking. He loves it.”

  

Daily life and challenges for the family

Katie explains; “It’s difficult sometimes, to put into words how much has changed since becoming a parent to a child with a disability, because you don’t know how you would have been had you not gone down that road. I’m on a completely different road now, but I wouldn’t change it.”

“It’s totally stopped me from worrying about the things that aren’t important and I hope I’m passing that on to my younger son Samuel as well. He can be quite self conscious, so I tell him; ‘We matter as people, but things don’t matter.’ It’s really helped me deal with things like; your child doesn’t have the most expensive football boots or playing at a certain level, so what. You don’t have to have material things, the focus is on your child and loving them, not the things you can give them.”

“Christian has taught me so much as a person and still teaches me every day. He makes me stop and think every day. So much goes on in his head that you really can’t judge a book by its cover. Never, ever do that, no matter what a child or adult may look like on the outside. You somehow let a lot of stuff go that would have concerned you before and that’s what I love about having Christian.”

“And of course, having another child as well, anyone with children will tell you that you have to keep behind them and help them along, and Christian is definitely no exception. Sometimes it’s easy and sometimes it’s not, so then we will have a go at something else.”

  

How Family Fund helped

“I first heard about Family Fund from Elaine, Christian’s portage worker who came out to see him when he was little. Our first ever grant was for a trampoline and it has given Christian years and years of joy. Both him and Samuel absolutely loved it to the point where it got so worn out, we had to get rid of it. The whole family used it together actually, that was the start of my relationship with Family Fund.”

“I saw a leaflet showing the other possible grants they could help with and thought a holiday would be really beneficial for Christian and our family as a whole. Holidays were near impossible to afford once I found myself a single parent back in 2011. But I knew growing up, how important they are to spend time together as a family, so I decided they would be the best option for us, and it’s what we have applied for ever since.”

“The grant of around £500 was the making of us really because we have been able to stay in some beautiful places. Early on we stayed in a cottage by the sea in Wales and my parents came along as well, we all still talk about that now. For the boys to spend time with their grandparents and create those amazing memories was perfect.”

“Christian loves the beach, it’s the first thing he does on any holiday, strips off and runs in the sea. He has no fear. So, in 2013, I thought how wonderful it would be for us all to go abroad? We chose Kefalonia and the Family Fund grant paid towards the break. It enabled us to have this amazing experience that I still have loads of photos of and we look back and talk about. Just seeing your kids relaxing in the pool and going out for meals in the taverna they looked so happy and relaxed, it was great.”

“I do have to prepare him for the holidays, I give him notice and then we talk through them, as long as he has enough preparation in his head, he is fine. In the airport we get a lot of support which saves us having to queue and stops Christian from feeling anxious. I also get him involved in his own packing, with his own case, to keep him focused on something. When you have a child with special needs, it's just something you're very used to; preparations. I don't know any different it’s been like that for so many years.”

“Now Christian's getting older in some respects holidays are easier and then in some respects they are harder. Last year because of COVID we couldn’t go abroad so we chose to go to a Haven caravan site. I hardly saw Christian because he was always over in the football area, he’s such a football fanatic, but it showed me that Christian could be independent. That was absolutely priceless for me. It was the most exciting part of the holiday, watching Christian grow and have his own independence, Family Fund helped with that. It goes hand in hand, without the support from Family Fund Christian wouldn’t have these opportunities.”   

Listen to the podcasts HERE (Spotify) and HERE (Apple Podcasts).

To find out more about our partnership with McCain and listen to further podcasts as they become available click HERE