“Noah’s holiday was life changing”
Vicky Cunningham, 40, from Merseyside, tells how Dreamflight gave her son the trip of a lifetime
For Vicky Cunningham, arranging a day out with her son Noah, 12, is no easy task. “Noah can’t walk and has several physical disabilities, so everything we do requires a lot of time, effort and money – we can’t even go to our local cinema so have to travel an hour to watch a film. Sadly this means I have to say no to an awful lot, but that has made me more determined to find every opportunity I can for Noah and his three brothers to have a good time and to ensure they don’t miss out.”
Noah was diagnosed with Duchenne muscular dystrophy (DMD) – a severe and progressive muscle-wasting disease that affects every muscle in the body – when he was two years old, after Vicky noticed he was having difficulties while learning to walk. “He was struggling to get off the floor and his walking was unusual, so I took him to the GP to get checked out.”
Over the next few months, Vicky, 40, and Noah visited several doctors – all of who insisted there was nothing wrong. “It was frustrating to be told Noah was OK when I knew something wasn’t right. I kept pushing and eventually, after a long consultation with our GP and a physiotherapist, we were referred to a neurologist at Alder Hey Children’s Hospital, Liverpool, in March 2006.”
The neurologist immediately diagnosed muscular dystrophy based on Noah’s symptoms, but arranged a muscle biopsy to confirm the type. “It was a huge shock to get the diagnosis and I don’t think it sank in for a week or two. I had all these plans for Noah that suddenly he wasn’t going to achieve, and I went through a sort of grieving period. As every single thing in your body works by using a muscle, I knew the condition would gradually affect Noah in so many ways.”
Noah is no longer able to walk and uses a powered wheelchair, and he is unable to lift his arms. He is also on a ventilator overnight. “I’m up all night with him, rolling him or fixing his vent,” explains Vicky.
“He requires support with everything – even things like having a drink or blowing his nose – and has a machine to help him cough. As your muscles protect your bones, he also breaks his bones a lot and has broken his back ten times.”
For Vicky, keeping Noah’s heart healthy is her main concern, as that is the most important muscle in his body. “We need to monitor Noah’s heart and respiratory system closely. As he can’t walk anymore, it’s difficult for him to keep his heart healthy through exercise, so we are currently fundraising for a hydrotherapy pool in our garage. Anything we can do to prolong his life expectancy is vitally important.”
Vicky’s other main focus is making sure Noah enjoys his life as much as possible. “Although there are a lot of things Noah can’t do, he is very determined and will give everything he can a go. He plays wheelchair football at Everton and his ambition is to play for England. He also loves learning and finding out about things, and he has a bucket list that includes activities such as flying a plane and swimming with sharks. I think if he could walk he would be a very adventurous child.”
In 2012, Noah’s neuromuscular care officer at Alder Hey told Vicky she had nominated Noah for a holiday with Dreamflight. Then, in 2013, Vicky got a phone call to say Noah could go on one of its trips to Orlando, Florida, later that year.
“I was nervous about letting him go, especially as he had only recently started to use his wheelchair, but I knew it would be a great opportunity and he was incredibly excited.
I couldn’t turn it down.”
In October 2013, Noah flew to Orlando with the Dreamflight team and 191 other children for a ten-day trip of a lifetime. “I don’t think Noah knew what to expect because he is used to not being able to do things, but at Dreamflight they don’t say no to anything – if one of the children wants to go on a ride they will find a way to get them on.”
As well as visiting the theme parks – including Universal Studios and Walt Disney World – the children had parties every night and swam with dolphins, and Noah was able to meet up with his uncle who lives in Florida. “It was an incredible trip and Noah really had the time of his life,” says Vicky.
The benefits of the trip also extended far beyond its ten-day duration. “Noah was quite shy before he went away, but he came back a different person. Being away from his family gave him a sense of independence and built his confidence – everyone said he was the joker of the trip. He made lots of new friends on the holiday who he still keeps in touch with and has since made lots of new ones at high school – he just gets on with everybody.
“I don’t think there’s a day that goes by where Dreamflight isn’t mentioned – it was just a completely life-changing experience. It really helped Noah to understand that, even though he might need a bit of help, he can still enjoy life,” says Vicky.
“Everything is still possible.”
Dream flight – THE FACTS
- Dreamflight is a UK charity, which takes children with a serious illness or disability on the ‘trip of a lifetime’ to the theme parks of Orlando, Florida.
- Each year 192 children from across the UK board a specially chartered aircraft for a ten-day trip, without their parents. They are cared for by
- A team of volunteer escorts including doctors, nurses and physiotherapists.
- Although the Dreamflight holiday only lasts ten days, the benefits for the children are often lifelong.
- Dreamflight 2016 will be the 30th trip and over 5,000 children have so far taken part.
- Visit dreamflight.org to find out more information.
BIG GIVE UPDATE
The £45,551 raised by Dreamflight will allow 12 children with a serious illness or disability to go on a ten-day trip to Orlando. The money will cover all costs for the trip, including travel and food, accommodation, medical expenses, dolphin swim and a welcome party
As told to Hannah McLoughlin Photos Colin McPherson