The Wish Children

My name is Samuel. I am 13 years old and in grade 7. There are seven people in my family. I am the second oldest of five children. My brother Braiden is the oldest and I have my twin sister Emma and younger twin brothers Tyson and Jackson. I enjoy reading books like the Divergent and Hunger Games series, or any book that has factual information such as National Geographic. . I love to build LEGO and spend lots of hours taking LEGO apart and putting it back together. I also like to play mini sticks with my family and video games with my brothers. Our family likes to play board games and watch movies together. We like to laugh and have fun together!! When I was two years old I was diagnosed with Duchenne Muscular Dystrophy. Since my brother, Braiden was already diagnosed with DMD, my parents had me tested to see if I had DMD too. My parents already suspected I had it as I never crawled and at the age of 2 I wasn’t walking yet. So it wasn’t a big surprise but they were still very sad that I had DMD. They knew things would be difficult for me! Today I use my power chair to get around school and whenever I am not at home. My mom and dad help me get up whenever I am sitting. Sometimes they even need to lift me out of bed when I can’t get off the bed properly. There are many things that I find difficult like putting on my socks and shoes but there are still a lot of things I can still do. I can still walk but only for a short distances. I help out around the house whenever I can. However, as my DMD gets worse, I will need help with everything and I won’t be able to do anything for myself. Some days it is really tough on our family as three of us have DMD and my brother Braiden and I are both in wheelchairs. It takes us longer to get ready to go anywhere because we need help to get our shoes and jackets on. Then my parents need to get both wheelchairs into the van. It is difficult to visit any place we have never seen as we don’t know if it is accessible for Braiden and I. My brother Jackson plays hockey and some hockey rinks are not accessible so therefore, we can’t go and watch him play. Sometimes I wish that I could play sports like hockey, football or baseball. It is difficult to watch other kids play sports, except Jackson - I like watching him play! I am undecided for my wish because there are so many different possibilities. I would like to go on a cruise ship or to Disney World. Perhaps going to Montreal to watch the Canadians would be fantastic too. Whatever I decide, it will be a trip of a lifetime. It would be an awesome time with my family. I would love it and we would create memories that we would never forget. When things get difficult for our family, we will look back on this time and remember how much fun we had together!

“Prior to my diagnosis, I was an extremely healthy and happy teenage girl. I was able to eat and do whatever I wanted. However, afterwards, my time was constantly torn between the 2 hour drive to Saskatoon for appointments, at least twice a week, doctors poking and prodding my neck with multiple needles at a time, trying to manage a strict diet and figuring out which pills I needed to take at which time. I lost my entire life; who I was before, ceased to exist.” – Lacey, 16 years old. In the summer of 2014, Lacey’s parents, Les and Lorraine, noticed a sizeable bump on her neck. Concerned, they took her to see a doctor to have it examined. After a multitude of tests, doctors concluded that she had Hashimoto’s Disease or, a chronic inflammation and eventual failure of her Thyroid Gland. By February of 2015, Lacey, along with her parents, decided she would have surgery, primarily for cosmetic reasons, but also to remove the pressure the bump was putting on her pharynx. However, prior to the surgery, “the goiter that was formerly on my thyroid got sent to the University of Saskatchewan for testing, revealing it was, in fact, malignant. I had stage 2 Papillary Thyroid Cancer.” Fast forward a few months and Lacey was going back to Royal University Hospital for her second surgery. This time, she had a complete thyroidectomy, removing the other half of her thyroid (also malignant), the adjacent lymph nodes and 3 out of 4 parathyroids. “Subsequent to the second surgery, I went through a round of radiation to ensure all the cells were killed off. Today, I have been in remission since May of 2016.” Although Lacey is now on hormone replacement medication, something she will have to take for the rest of her life, she is starting to feel more like herself. She will continue to visit the hospital every 6 months for further testing but for now, she is focusing solely on her health and her one most heartfelt wish! Approved for a wish through The Children’s Wish Foundation in July of 2016, it did not take Lacey long to decide that she wanted to travel to Spain. “I chose this (wish) because travelling is my passion; there is nothing I’d rather be doing. (Since my diagnosis) I have not been able to travel much – between appointments, being sick for periods of time and it being a hassle to carry around medication…I feel that travelling will remind me that what I am going through today is just a small part of life.” This coming winter, Lacey, along with her parents, will jet off to Spain for a week free of hospitals; a week free of illness. Although her diagnosis has changed who she was, the impact of Lacey’s wish is not lost on this girl, somebody wise beyond her years. We know that Spain will be the perfect place to find out who she is now and who she hopes to be in the future.

When Alexis was 18 months old, despite having been a good sleeper up until this point, she began crying out in pain virtually every night. Hoping this would just be a phase, Shianne and Jordan, Alexis’ parents, waited until her 2 year check up to bring their concerns to the doctor. Although they decided to wait it out in hopes it would pass, Shianne took her little girl back to the doctor when she realized things just weren’t improving. “By the end of May 2013, her (red blood cell) counts had not improved and her temperature spiked a fever so she was admitted into Royal University Hospital…(after some testing and ruling out a possible blood infection) it was decided they would do a bone marrow biopsy to rule out cancer. Within 24 hours the results were back and our little 2.5 year old was diagnosed with Acute Lymphoblastic Leukemia.” Alexis immediately began her treatment regime, one that would last for 26 months and include various Chemotherapy drugs taken orally, by IV or administered directly into her spinal fluid. “Alexis’ dad’s job is an out of province job and he had to take the first three months of treatment off work as we needed to fight this battle as a family. Our little girl was not going to fight this fight alone and she needed all of us, so we did what we needed to pull through the next two years of her life on treatment,” Shianne said When Alexis turned 3 years old, she was approved for her one most heartfelt wish with The Children’s Wish Foundation. As she was very early in treatment, the family decided to wait until she was a little older and could really celebrate being her happy and healthy self again. On September 4th, 2015, when her two years of treatment had come to an end, Alexis had her final appointment and was officially considered to be in remission. Along with her family, she started to plan! In the spring of 2016, Alexis chose to visit Disney World with her family to meet all of her favorite princesses. “The wish trip was a very emotional trip for our family…We take each day as it comes and enjoy each and every day together. The trip made us all remember to be thankful for what you have and who you have in your life as there is always someone who is on a different path in life which may be more difficult.”

Ten years ago, Nikki and Jason were preparing for the arrival of their first child. Not knowing what to expect, but thrilled with the impending change to their lives, it came as a shock that, on the day their little girl was born, the doctors discovered a problem. Although it would take time to figure out what that problem was, baby Jordyn was eventually diagnosed with Congenital Muscular Dystrophy, an illness that would affect the rest of her life. For the majority of her childhood, Jordyn has had a regular schedule of appointments for various therapies. She sees Occupational Therapists and Physical Therapists, and has attended Speech Therapy and Feeding Therapy as well. “This is our life, our normal, we don’t know any other way,” said Nikki. “There is definitely a schedule to our life and daily ‘tasks’ that need to be accomplished and we have to plan ahead if we are going anywhere.” Despite her schedule, Jordyn is full of spunk and energy. She is monitored with regular Doctor’s appointments and keeps her parents and family on their toes. A child who loves to dance and sing, it was no surprise that, when Jordyn was approved for her wish in April of 2015, she would choose to visit Disney World. On September 3rd of 2016, Jordyn and her parents headed off to Florida to visit Give Kids the World and see all of her favorite characters at the Disney parks. “We found out that we can travel, it is possible, and Jordyn loves to go on airplanes. We saw so many wonderful things and visited so many wonderful places that we want to see more!!” It was on this trip that Jordyn won her first ever trophy competing in Village Idol and now, after the trip of a lifetime, she is ready to compete again!

At 6 months old, Sydney and her family were spending some time at the lake when they decided they needed to see a doctor for what they thought was pink eye in one of Sydney’s eyes. It was at this appointment that the Weir family’s world started to unexpectedly tilt. Referrals were sent and appointments were booked for October 6th of 2008. At the Kinsmen Children’s Centre, Sydney was seen by a Physio Therapist, Occupational Therapist and a number of doctors. A shock to her family, she was unofficially diagnosed with Cerebral Palsy. On January 20th, 2009, after several appointments with Dr. Huntsman, a Neurologist at Royal University Hospital, and an MRI, Sydney was given her official diagnosis of Spastic Quadriplegia with Cerebral Palsy; she would never walk, talk or be able to sit on her own. It was learned at this time that Sydney had likely suffered a stroke or seizure in utero, causing a lack of oxygen (for a split second) to the part of her brain that controls muscle movement – although things would not get any worse, her condition was irreversible. Over the years there have been numerous appointments, surgeries, EEG’s and MRI’s, there have been countless doctors, travels out of province, hospital stays and even ambulance rides. In the beginning, the family travelled between their hometown of Perdue and Saskatoon for all of Sydney’s appointments, however, in 2010 they made the move to the big city and eventually settled in Martensville in 2014 giving them the best of both worlds –they were close to appointments and were back to small town living. After years of dealing with Sydney’s medical concerns, the Weir family received “the most amazing call from the most amazing person and at the most amazing time,” said Sydney’s mom Stacey. In February of this year, “while sitting in a hospital room, Sydney having influenza, ear infections and being dehydrated, we got a call (telling us) Sydney had been granted a wish! Excitement and gratitude, tears and thankfulness cannot fully describe what was felt.” The Weir family wasted no time in deciding what would best suit Sydney and her needs. Although they had originally thought one of the Disney parks would be great, they realized quickly that, because she gets so tired during the day and her wheelchair would hinder her ability to enjoy any rides, it was best that they go a different direction. The family quickly settled on a Disney Cruise, something that would strike the perfect balance. On October 14th of this year, the family set sail through the Caribbean. “Music, entertainment, lots of swimming and a room on the ship that was close by when naps were needed…let me tell you, it was wonderful,” exclaimed Stacey upon their return. “All four of us had an amazing opportunity and we will never forget the generosity of the Children’s Wish Foundation!”

On the same day that a car crash killed her mother, Aurora Sky was born into the world 3 months prematurely. She was barely more than two pounds and suffered a head injury in utero. It was a day that saw Josie Ledoux say goodbye to her youngest daughter and become the primary care giver to her very first grandchild. Although her grief was all consuming, Josie finds joy in the similarities between mother and child. Aurora, stricken with many medical concerns, continues to grow and develop with the help of her loving family. “We are so lucky to have her in our lives …each and every day is a blessing that the dear lord gives us with her.” Aurora spent the first 5 months of her life at Saskatoon’s Royal University Hospital. She now visits the hospital regularly for various reasons including the shunt and reservoir she has in her head to help drain spinal fluid. She eats through a tube linked directly to her belly and most recently, Josie found out that only one of Aurora’s kidney is functioning properly, while the other has not developed since birth. “She has been through a lot…her story is heartbreaking and miraculous. Aurora has come so far in her (short) life, she is 3 years old now and still with us.” In late September of 2016, Aurora was referred to, and approved, for a wish through the Children’s Wish Foundation. As she is non-verbal at this time, her grandparents are taking some time to think about what would be truly special for their little one. Although they are considering an RV trip across the country to allow Aurora to enjoy the outdoors and let her see the country, there is also talk of meeting Luke Bryan, one of her mother Brandi’s favorite singers. “We would love to see him sit by her and sing a song for her…this would be the ultimate wish for her.”

BRAXTON

As a young family, Brad and Andrea never imagined one of their babies would get sick.  At two years old, Braxton seemed to be the relatively healthy older brother to 10 month old Ainsley.  When their little boy came down with the flu, one that just wouldn’t go away, they took him to the hospital to be checked out.  After 6 weeks, multiple tests and 2 bone marrow biopsies, Braxton was finally diagnosed with Acute Lymphoblastic Leukaemia or, ALL.

Over the next 3 years, Braxton was in and out of hospital having chemotherapy, getting blood transfusions, receiving lumbar punctures and taking steroids.  He underwent two surgeries to have a port inserted and then to have the port replaced when he had outgrown his original one. “This was very hard on us as he was only 2 when he was diagnosed. We are lucky to have a very close family (so we) had a ton of support. (Throughout it all) we tried to keep things as normal as possible for him with playing sports and going swimming but it’s definitely been a challenge when he can’t be in the general public in order to keep him from getting sick. I (Andrea) took an extra year off work as we had weekly clinic visits and hospital stays.”

Approved for his one most heartfelt wish on his 3rd birthday in 2014, it was only a year and a half later that he chose to visit Disneyland with his family.  Having spent so many days in isolation, it was the plethora of Disney movies that got him and his family through his treatment plan. Disney was a part of his routine, much like brushing your teeth is every morning.  “Braxton has so many exciting memories that he still talks about. One set of grandparents and his aunt, uncle and cousin were able to join us on this trip…(we really did make) memories that will last forever!”

“It is crazy to think the last 3 years of hospital stays, clinic visits, hair falling out and gaining a ton of weight due to steroids is ‘normal’ to him. He has been so strong and brave through it all. He really is a hero!! – Andrea, wish mom to Braxton.