The Wish Children

Connor is 13 years old and has Duchenne Muscular Dystrophy (DMD). He was born with DMD but it wasn't until he was 5 years old that he was diagnosed. Since then, he has been going twice a year for check-ups at the IWK.

Even though Connor has lost his mobility, that doesn't stop him from going outside on his 4-wheeler or going to the beach. He also enjoys watching movies, building Lego, and putting together model trucks. He has a younger sister, Hannah and a younger brother, Cannon who he loves very much! He is also very grateful to his parents for everything they do for him.

As a young child, Aden tried really hard to participate in all kinds of activities: riding a bike, hockey, baseball, karate, waterskiing and swimming lessons. From an early age, we noticed that these activities were difficult for him. He found it hard to balance on the bike and on skates. During swimming lessons and karate he would tire easily. Sometimes we thought he just wasn't trying hard enough.

When Aden was 11, in May of 2014, it was discovered at a routine checkup, that he had a heart murmur that had not been noticed before. We were referred to a Cardiologist from the IWK. We were not too concerned at that time as lots of children had heart murmurs. It wasn't until the Cardiologist came in to the room and asked me to sit down that I realized how serious the heart murmur was. He diagnosed Aden with a heart condition called "Hypertrophic Cardiomyopathy". Aden was no longer permitted to take part in competitive sports or anything else that would elevate his heart rate for an extended period of time, as it would place him in cardiac arrest. We were scared to let him leave our sight. It was going to take 3 months for us to monitor his heart to see exactly how things were progressing.

It was a scary time for us as well because we weren't sure what was going on with his heart. However, it did explain why he always seemed so tired trying to do physical activities. This diagnosis didn't stop Aden from wanting to be physically active with his friends, so we needed to figure out how he would keep up with his friends on outings. We like to spend time at our camper during the summer which is not very close to the hospital. So, we quickly got our hands on an automated external defibrillator (AED) for our home and made sure that one was purchased for his school. Our family and his teachers needed to be trained in CPR and the use of AEDs.

While we were busy making sure things were safe for Aden, his Cardiologist was busy trying to figure out the etymology of Aden's heart condition. During one of our phone calls, the Cardiologist asked if Aden had any other issues we were concerned about. We brought up the issue of balance that we noticed. That initiated a referral to a Neurologist and Geneticist at the IWK. The day before Aden's 12th birthday we discovered that he has a genetic neuromuscular disease called "Friedreich's Ataxia". Although this explained why Aden struggled with balance, it was difficult news to hear. While there are medical procedures that can control his heart condition, there is no cure for Friedreich's Ataxia. Aden's mobility will continue to be affected with no idea of how far it will progress.

We travel to the IWK every 6 months where Aden meets with his Cardiologist, Neurologist, Physiotherapist, Nutritionist and Social Worker. He has exercises to keep stretching the muscles in his legs. He no longer takes swimming lessons but often goes to the pool to exercise his legs. There really isn't much more doctors can do for Aden at the moment. They offer suggestions for exercises and guide us in the right direction for organizing disability parking, ordering wheelchairs and any other services we may need as his condition progresses.

If you were to ask Aden what it is like living with Friedrich's Ataxia he would say, "It's not fun because you can't control your legs when you walk and sometimes you miss out on things with your friends." Aden is a trooper! His personality and sense of humour are what draw people to him. He is a social teenager and still participates in Phys. Ed. His buddies are great at including him on their intramural teams even though they know he cannot perform at the same calibre as they can. He finds it difficult not to be able to play on the sports teams alongside his friends and tries to get involved by working the timers and scoring the games.

As a parent, it is extremely difficult to watch him lose his mobility. We have to remind ourselves to stay focused on the things he can do instead of the things that are becoming more difficult. It's all about finding ways for him to work smarter, not harder at everyday situations that he encounters.

We are now 2 years into this journey and are finally at a stage of acceptance. We think it is important for him to advocate for himself and to try and make a difference. We are always advocating for Children's Wish through social media and suggest people donate when we see opportunities in the community. So, thank you for taking the time to make a difference in Aden's life!

Aden is a very humble, soon to be 14-year-old. He is extremely grateful to have this wish and couldn't believe he was chosen to share his story. He is putting lots of thought into this wish as he doesn't want to look back on it when is 17 and regret the decision he made. At first, he thought visiting the set of "The Walking Dead" TV series would be pretty cool, but he is also thinking about a cruise. He is curious about the world and loves to see new places. He thinks a cruise would be a neat thing because he could see more than one place and could be doing some things in the water which is really where he enjoys being the most.

 

Josie's family has been supporting The Children's Wish Foundation for many years. Her parents have always attended the Children's Wish Wishmaker Walk with their girls and have participated in many golf tournaments held in support of Children's Wish. They have been active supporters who are familiar with the Foundation and its mission. They were also very grateful to have 3 healthy children attending many of these events with them.

That changed when their youngest, Josie was just four and a half years old. In April of 2015, she was diagnosed with Cystic Fibrosis (CF), the most common, fatal genetic disease affecting Canadian children and young adults.

Since her diagnosis, the family's "new normal" consists of Josie taking antibiotics daily and pancreatice enzymes every time she eats. This equates to about 35-50 pills per day. She also does physiotherapy three times a day. Her routine takes almost 3 hours per day and she finds it difficult to sit still for too long! Josie has two big sisters, Dana and Lauren, and she loves to play with them on their trampoline. Josie loves her family and friends, school, soccer, swimming, and skating. She can't wait to start ringette!

Josie was the Children's Wish Wishmaker Walk Marshal in Charlottetown in 2015 and her family continues to support The Children's Wish Foundation, PEI Chapter. Now, more than ever, they know how important the Foundation is to children with life-threatening illnesses and their loved ones.

Josie is not quite sure just what her wish will be just yet, but she and her family are very grateful to be given this opportunity and something positive to look forward to that will help ease the burden of her lifelong illness.