Kye, her mum Denise and her brother and sister jetted off to Disneyland, Florida in February for the holiday they’d always dreamed of. It was Kye’s first long-haul trip in eight years and didn’t disappoint. Says Denise: “It was such an enjoyable experience; I will never forget it!
“With Kye, if she’s not feeling it, she’s sleeping – Kye slept at night only, so I know she enjoyed every single moment of that holiday, which made it special for me. It was so good for everybody’s morale.”
The holiday was such a success that Denise wanted to share her travel tips with other parents in her situation. “For us, travelling to the supermarket is a military procedure in itself. So going on holiday can be quite daunting – it’s not easy, but it is doable.”
Kye acquired brain damage after suffering a common virus aged eight months, which damaged all her cognitive skills except her hearing. The family has been supported by Noah’s Ark since 2009 and Kye now receives weekly visits from Specialist Play Worker, Vikki Kempster. Kye is home-schooled and, says Denise, “the play sessions have been such a part of her life for a long time, which is wonderful.”
For Denise the key to a successful holiday is all in the planning. “I give myself at least six months. The complexity of Kye’s illness means she can be fine in the morning but in intensive care by lunchtime, so one of the first things I do is to check what the local facilities are like; if there’s a children’s hospital close by.
“You have to make sure the airlines will accept you and all your needs. For example Kye requires oxygen. Each airline wants to know ‘can this child fly?’” This may mean bringing forward regular health checks and getting a slot with your child’s medical team as some airlines require letters from a consultant.
“Once you build a rapport with an airline it works so well. They really do roll out the red carpet; they want to make sure things go well as much as you do.
“Make sure you order all your medication and prescriptions in plenty of time. Instead of bringing boxes of milk and feed, companies will deliver to your destination as long as they have notice.
“Familiarise yourself with all your equipment and the batteries it needs. Have a wheelchair MOT and learn how to tighten all the bolts, because things like this can make or break a holiday.
“And make use of all the special assistance you can, which is great as it means no queuing.”
But Denise’s main message is to give it a go. “These are memories that you’ll take with you forever, they are priceless. I’d tell every parent to go for it, the help is there and it’s well worth it!”