A roll in the woods

This story first appeared in the Information Point newsletter Our World in 2013, when Sarah Foye told The Information Point about a visit to the Appalachian Trail.

My son, AJ, age 12, has centronuclear myopathy caused by a mutation in the Titin gene. AJ was recently required to read a non-fiction book as part of his language arts class in 6th grade. He chose the book, ‘A Walk in the Woods’ by Bill Bryson. As a result of AJ’s condition, he uses a wheelchair for long distances as he tires easily and since holding books for long periods of reading can tire AJ, he often chooses to listen to the audio version. One benefit of him listening to books instead of reading them is that we can enjoy them together.

‘A Walk in the Woods’ is a hilarious tale of one man’s attempt to walk the Appalachian Trail. The Appalachian Trail is one of the longest continuously marked footpaths in the world, measuring roughly 2,180 miles in length. The Trail is located in the United States goes through fourteen states along the crests and valleys of the Appalachian mountain range from the southern terminus at Springer Mountain, Georgia, to the Trail’s northern terminus at Katahdin, Maine.

This amusing story opened up a world not generally revealed to people with physical disabilities and after learning about the Appalachian Trail through the book, we realized that a portion of it runs through our home state of New Jersey. After some research, we also discovered that a portion of the New Jersey Appalachian Trail has a wheelchair accessible boardwalk, so one beautiful fall afternoon we took a drive to that corner of our state and discovered a glimpse of the world described by Bill Bryson. We joked with people who passed us by that we pretty worn out after traveling all the way up from Georgia.

We discovered also that there are other sections of the Appalachian Trail that are wheelchair accessible, such as the Appalachian Trail on Bear Mountain and the Appalachian Trail in Vermont. Also that the United States National Park Service makes an effort to make many national parks wheelchair accessible.

So, that’s one thing AJ crossed off his bucket list: hiking on the Appalachian Trail. With some advanced research, many trails may be open to you, too. Happy trails.

The Hippocampe All Terrain Wheelchair

This story first appeared in the Information Point newsletter Our World in 2013, when Clair Tierney wrote about her experience of the Hippocampe All Terrain Wheelchair. 

Luke is eight years old and has X linked myotubular myopathy. He lives with his mum Clair, dad Paul and sister Anna aged 11 in Coventry. Below Clair writes about her experience of the Hippocampe All Terrain Wheelchair.

As the years have gone by, taking our son Luke on holiday has become more and more difficult. We found that Butlins was the easiest holiday to manage as the staff were so accommodating and the apartments very large and spacious for our budget. Everything is flat and easily accessible. However, one of the hardest things was getting Luke down on to the beach. When he was much smaller and weighed less he was fine to carry down to the sea to see and touch the water and his wheelchair was small enough to pull on the beach, but as he grew and the wheelchair grew it was no longer possible. He would spend the time just sitting by the tent and building castles. Obviously we made sure he still had lots of fun but I couldn’t help feeling guilty as he watched his sister and dad go and have fun running along beach, playing by the sea, jumping over the waves.

We first saw the Hippocampe when visiting friends, they had entered a competition and won one. We thought it was brilliant. Luke had a go in it and he looked very comfortable. Our friends explained that it could be towed, pushed or self propelled and it was very easy to turn. It can go onto the beach, in water, on rocky ground and is even great for the snow. It was designed for disabled people by disabled people and is for any age to enjoy outdoor activities to their full ability. It was practical and lightweight and came with separate beach wheels which were very easy to change. We were impressed so we went home to research it but it cost £3,500, a lot more than we could afford.

So with supporting letters from our Children’s Community Nurse and occupational therapist we wrote to a few charities to see if they could help to fund one. They couldn’t. One said no because it is a wheelchair and Luke already has an electric wheelchair. Another said no because it was a leisure item not a necessity. We were frustrated by this because, yes he already has a wheelchair but he certainly could not use it on the sand, rocky ground, or in the snow and as for it being a leisure item, all children need leisure even the disabled ones but other children’s leisure is free, they just put one foot in front of the other and run like the wind. Unfortunately for our disabled kids, they cant do that, so we, the parents have to pay thousands of pounds for the same leisure. It seems cruelly unjust.

So, we then decided to research the possibility of hiring a Hippocampe for our holiday and came across Equipment Services in Somerset. They very kindly agreed to deliver it to Butlins and pick it up for the brilliant price of just £21 for the week. We were delighted. We can honestly say it was life changing for Luke, we all ran and played together on the beach and he said it felt brilliant racing around on the sand going in the sea, something he had never done before. If we had £3,500 we wouldn’t hesitate in buying one of these fantastic wheelchairs, especially as winter is now approaching and we have exactly the same problem in the snow as we do on the beach. We would highly recommend this equipment. It made our holiday and will look into hiring it again next year.

Queensland Gladiator

This story first appeared in the Information Point newsletter Our World in 2011, when Zac, then aged eleven, was selected to represent Queensland in the Australian National Electric Wheelchair Sports competition.   

My son Zac who is 11 years old has been selected this year to represent Queensland in the Australian National Electric Wheelchair Sports Competition. I am so proud of his achievement.

Since he was diagnosed with a very rare form of muscular dystrophy called myotubular myopathy at 6 months old I have watched his mobility become more and more restricted. When he went into an electric wheelchair full time two years ago, I looked around for an activity that could connect Zac with other people in wheelchairs. I found electric wheelchair sports at a school a long way from our home in an annual wheelchair sports demonstration.

I had never heard of electric wheelchair sports before but here they were – sports for people in electric wheelchairs. I immediately wanted Zac to be involved and took him along. This was 18 months ago. He loved it, for the first time I saw him get that competitive look in his eyes and when he got his first goal it was priceless. In fact, we were both hooked. It is lovely to see him be enthusiastic and be able to compete in sports. Zac has played all year and has qualified for the Queensland Gladiators team for the first time.

The sports include hockey, soccer, and rugby league. Each have been modified slightly from the standard rules of each sport, in order to ensure everyone can play. Soccer, for instance, was played with a monster inflatable balloon, while touch rugby league didn’t even have a ball. Okay, I might need to explain that last one a bit. Because a lot of the players couldn’t pass a real football, they use numbers instead. For instance, Zac is number four. If someone wanted to pass to him, they would call his number and he’d yell “Got it”, meaning he then had the ball. If Zac wanted to pass to someone, he’d call their number. I couldn’t watch them play rugby at first as the way to tackle an opponent is by smashing their wheelchair into their opponents. Something that went against all our rules of how to use a wheelchair safely.

The beauty of this competition is that these sports aren’t dependent on strength or physical prowess but instead on strategy and the ability to drive one’s chair. All Zac knows is that it is incredibly fun and that it is an opportunity to play sport like all his friends. I have seen the greater benefits the sport has to offer and this includes Zac being mentored by the older players, some in their 30’s and for me connecting with other parents and forming fantastic support networks.

I will be heading down to Sydney in April with Zac as his carer and official timekeeper for the team. Zac has set his sights on being selected into the Australian team to compete in the European International competition in Switzerland. So fingers crossed!