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.

The Foye family.

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.

Make a wish (a visit to Disneys Animal Kingdom)

This story first appeared in the Information Point newsletter Our World in 2013, when Diana Manny told The Information Point about her family visiting Disney’s Animal Kingdom in Florida, after her son Luke, who is diagnosed with  X- linked myotubular myopathy, had a wish granted by the Make a Wish Foundation. 

Diana, Danin, Luke, Mikalela and Taylor.

Luke was nominated when he was three years old to receive a Make a Wish. He is a lover of animals especially elephants. Make a Wish after interviewing Luke offered to send him as well as our whole family to Disneys Animal Kingdom in Florida.

They started preparing by setting up the details of when we wanted to go. We choose October hoping that the weather would be mild enough for Luke to enjoy endless days at Disney. They set up a party where they presented his trip a week before the trip. The volunteers from Make a Wish came, decorated our home, brought Lukes favorite things to eat, pizza, lollipops, and lemonade. We then were presented the details of our trip. Seven days at Give Kids the World, three days at all four of the Disney parks, two days at both Universal Studios parks and a day at SeaWorld. Not to mention spending money for all the treats and souvineers Luke and his sisters desired. The next seven days Luke was filled with excitement like waiting for Christmas to come.

On October 17th in the early part of the morning the limo arrived. We all piled in and went on our way to airport. Flying was a blast. People from American Airlines were eager to help us on our way. At the end of night we arrived in Florida.

We were met with a volunteer from Give Kids The World who had our luggage already on a cart. He escorted us to our rental van and we were on our way to the resort. We arrived at Give Kids The World, Luke was the star. He was presented with his own Mickey Mouse and was promised that Mickey would be at the resort to meet him personally during our stay. We walked into our villa and on the table were presents for all the children. It was as if Santa had been there. We soon learned that Give Kids The World Village has a fairy that comes everyday and leaves gifts when you are out and about.

We spent the next seven days going to Magic Kingdom, Animal Kingdom, Hollywood Studios, and Universal Studios. Each day was filled with magic, from placing Luke’s special star in the wish tower at Give Kids the World Village to personally meeting Buzz Lightyear, Woody, Mickey Mouse and even Transformers.

I cannot thank Make a Wish enough for the trip. It was hands down the most magical special trip by far we have ever experienced. Lukes days were filled with magic in each and every day. No day was short of magic.

Luke was made to feel as if were the most important person on the planet by everyone he came across. He starred in a parade at Universal with Spongbob and got a high five from Mickey Mouse when he was in the Castle. His smile lit up the sky as much as the fireworks did.

Luke wasn’t seen as a sick child with a life threatening illness he was just a regular five year old boy who loved Buzz and Woody. The time he got to laugh and have fun with his family made it more special. He even went swimming in a special wheelchair at Give Kids The World and we got to meet another MTM family while we were there.

Its been an amazing journey the past five years since Luke was born. It is nice that Luke has been well and what a better way to celebrate that than by Make A Wish sending us on vacation. It was nice to say yes every day to the kids. To let them get whatever they wanted. Luke even bought treats for his classmates back home and his nurses. It was just a special time. Time that will be forever remembered no matter where our journey takes us. The memories are priceless and will be forever cherished.

Medical clearance must first be obtained for a wish to be granted.

Eligibility criteria and referral information can be
found on the Make a Wish Foundation website.

Make a wish (a visit to the Aurora Borealis)

This story first appeared in the Information Point newsletter Our World in 2013, when Sarah Foye told The Information Point about her family visiting the Aurora Borealis,  after her son had a wish granted by the Make a Wish Foundation. 

The Foye family.

AJ is a 12 year-old boy with centronuclear myopathy resulting from a Titin gene mutation. He recently had a wish granted by the Make-a-Wish Foundation to visit the Aurora Borealis in Alaska. Below AJ’s mum Sarah writes about the experience.

While in the Chicago area several years ago my family had the pleasure of meeting with Scott Crane and his family. Scott also had CNM but sadly, passed away in 2011. For those people who knew him, his positive upbeat attitude was infectious. His motto was ‘Spread smiles to everybody, everywhere, each and every day’. One thing that Scott spread to my family was the idea of creating a wish with the Make-A-Wish Foundation. Scott told us about his wish to meet Michael J. Fox and how much joy that brought to him and he strongly encouraged my husband and I to pursue a wish for AJ.

The Make-A-Wish Foundation grants wishes for children with life threatening medical conditions to enrich the human experience with hope, strength and joy. A wish is powerful medicine for children who are living with the day to day realities of a life threatening medical condition and can rejuvenate a child and offer a new sense of inspiration, hope and encouragement. The wish process is an opportunity for children to explore their most wanted dream and watch as it becomes a reality and a chance for the whole family to allow magic into their lives.

In April of 2012, it was determined that AJ was eligible for a wish. It was a very exciting time that started the process of working with the Make-A-Wish volunteers to target AJ’s one true wish. Wishes can be grouped into different categories including: Is there something you wish to BE? Is there someone you want to MEET? Is there a place you would love to GO? Is there something you would like to HAVE? Remember, it’s the child’s one TRUE wish.

AJ knew right away that he wanted to see the Aurora Borealis. The Aurora Borealis is an amazingly beautiful, breathtaking sight also known as the Northern Lights. It fills the night sky with miles of glowing, dancing lights that look magical and have an awesome scientific explanation. Our powerful sun creates solar flares, emitting hot plasma containing charged particles. This solar wind travels through space 93 million miles and then hits our planet, where Earth’s magnetic field (magnetosphere) deflects it, funneling it to polar regions like the arctic circle.

Miles above the earth, the sun’s charged particles collide with oxygen and nitrogen atoms, creating a magical glow of fluorescent green, blue or red. It may last hours, or just minutes. To see the Aurora Borealis, you generally need to travel close to the arctic circle, like far northern Alaska … in the winter. Brrrr! Then watch for it in the middle of the night.

So, with that planning in mind, we nearly had a heart attack. Would it really be reasonable to take a child with CNM to this kind of a location for a wish that may or may not even take place thousands of miles from their home? Well, with the help of the Make-A-Wish Foundation we found a way to make it work. On March 31 2013 our family saw the Aurora Borealis for the first time. It was a dream come true. We also saw it every single night we were in Fairbanks, Alaska.

It was very moving to celebrate the fulfillment of AJ’s dream. AJ created this wish from his heart and stuck with it, even in the face of challenging circumstances. He reached for the stars and pulled this wish toward him with his dreams, desires and determination. We were so proud of him. The feelings of joy, excitement and pride are hard to describe in words. Scott Crane would be proud too.

Medical clearance must first be obtained for a wish to be granted.

Eligibility criteria and referral information can be found
on the
Make-a-Wish Foundation website.