The Wish Children

Dominick was born with a rare genetic skin disorder called Epidermolysis Bullosa (EB for short). Dominick’s skin is fragile and will blister or tear very easily - something as simple as the seam of a shirt will cause damage. Dominick was also born with a malformed lower leg caused by amniotic band syndrome.

This year Dominick has undergone several surgeries in an effort to heal a chronic wound. While EB creates many challenges for Dominick, he is still a happy and rather goofy four-year-old. He loves dragons and super heroes, animals and reptiles, and exploring how things work.

Dominick has not yet decided his wish, but we imagine it will involve something mystical and imaginative!

 

 

 

 

Positive and active Jayde has been through so much in her ten years. She began symptoms of a very rare disease called Hyperoxaluria at the age of six but underwent years of testing until finally being diagnosed in 2012. Her life has been filled with numerous doctors’ appointments, x-rays, ultrasounds and blood tests causing her to lose venous access in one of her arms. “No child should have to look at a nurse and say ‘you can’t use this arm because the veins are no good’” says her mother.

Primary and Secondary types of this condition exist and Jayde is still awaiting genetic test results for confirmation of what type she has. Hyperoxaluria is characterized by the kidney’s inability to break down oxalates. This has led to Jayde having three chronic kidney stone developments. High rates of kidney failure requiring a transplant are often needed with this disease.

Jayde is forced to eat a low oxalate diet and now must struggle with bowel difficulties because her fiber intake is limited. She is also lactose intolerant and frequently has bowel and colon spasms from improper organ expansion and constriction. Due to this, she must take several medications that reduce oxalates to keep her bowels moving properly. At times when her oxalate levels are high, Jayde will experience tingling and weakness in her legs and arms. The pain is often debilitating for her. Unfortunately, her strict dietary restrictions exclude her from enjoying chocolate, berries, nuts and wheat which is extremely difficult in social situations.

Along with all these struggles Jayde also suffers from asthma along with numerous environmental allergies causing severe exacerbations. She has had a growth removed from her bronchial tubes and now has an inflamed appendix of unknown reasons.

Jayde decided that her wish would be to go swimming with dolphins and going on fast rides in Disney World!

Jayde’s mother’s wish is to see her daughter forget about her disease and ongoing doctor’s appointments and just enjoy being a kid for a bit. Her mother states, “Even though she does have such a great spirit most of the time, there are the odd days where she just does not seem so hopeful and expresses how she wishes she could be someone else.”

The family is grateful for all the support they have received from both the Children’s Wish Foundation and the community. They acknowledge that without the community support and donations, wishes like Jayde’s could not be granted. The events, such as “Exile Island”, always put a huge smile on Jayde’s face. They really enjoy the variety of events put on by the Children’s Wish Foundation and have “amazing experiences”.

Within moments of her birth, Hope struggled to breathe. She was immediately taken to the neonatal intensive care unit where she was intubated (tube down her throat) to help her tiny body get oxygen. A few hours later she was transferred to another hospital in Winnipeg and barely 24 hours after her birth was flown by air ambulance to the Stollery Children’s Hospital in Edmonton. She was diagnosed with Pulmonary Atresia with Atrial Septal Defect, a serious congenital heart defect that is often diagnosed before birth, but in Hope’s case did not show up in any of her fetal scans.

While in Edmonton, Hope underwent PDA litigation and then had open heart surgery to put a central shunt in her chest. Several days later she had to undergo the procedure again to revise the shunt because it had clotted. Hope responded very well after the second surgery, and by the time she was 5 weeks old she could go home with her family.

Hope is now a sweet, funny and very clever 5-year old. She continues to be closely followed by a pediatric cardiologist and she receives great care at the Children’s Variety Heart Centre. In the next year she will be undergoing an MRI to get a better look at her right ventricle and the doctors will need to determine if additional surgery is required. Although she lives with very low oxygen levels, she always seems to have more energy than her mom and dad!

 

Hope hasn’t decided yet what her Wish will be, but is having a lot of fun thinking about all the possibilities. She has some really great ideas - like taking a rocket ship up to see the moon (but only if Queen Elsa from the movie   Frozen can come too), and meeting a “real, live unicorn”. But no matter what Hope decides for her Wish, her family knows that it will become one of her fondest childhood memories. The Children’s Wish Foundation really does make a difference not only in children’s lives, but for entire families. Hope and her family are extremely grateful to the Wish Foundation, and to everyone who generally donates their time and money for this worthy cause. 

My name is Skye Stewart.  I am 14 years old.  In October of 2015 I was diagnosed with AML Leukemia.  I was all finished with my chemo on February 7,  2016 and am all better now!

I love to play all sports but my favourite is hockey.  I also love school; doing flips on my trampoline and hanging out with my friends.

My wish is to go to Disneyworld with my family. 

 

 

 

 

Bryce is 9 years old and he has been diagnosed with stage 4 TCell lymphoblastic lymphoma. He had a massive tumor that was pressing on his heart so he had to have emergency surgery to drain the fluid from his heart sac. He was diagnosed on February 19, 2016 and he will be in treatment until June of 2018. He has an older brother Cade who is 11years old and a younger sister Vilena who is 7yrs old. He would like to become a scientist when he grows up. He loves animals and has a pet Husky named Slushy who he loves dearly. He is a sweet and caring person always thinking of others first. He is a light to us all.

 

 

 

. . .  her life began with an unexpected medical journey  followed by a wish . . .  she is now an active and energetic pre-teen with so much more yet to come . . . and deep gratitude for the wish that brought Disney magic into her life . . .

On April 6, 2004, we brought a beautiful baby girl, Robyn Arielle Ward home from the hospital.   Big sister Rebecca welcomed her new baby sister home as we spent a joyous five days together.  On the fifth day, we began an unexpected journey into a new and frightening world of hospital stays, medical vocabulary and life spiraling out of control.  Robyn was diagnosed with two unrelated congenital heart defects.   When Robyn was five weeks old, our family travelled to Edmonton where Robyn had open-heart surgery to repair one of her defects.  After a stay in Edmonton of three weeks, including complications with her second defect, a cardiac arrhythmia, and a continued whirlwind of emotions and experiences we returned home. 

Through the next five and a half years, Robyn required medication two to three times daily and continued care through the Variety Children’s Heart Centre, with regular visits, tests and monitoring of her heart rhythm as needed.  She learned quickly to describe her heart rhythm as a toddler with the first sentence she was able to say being “Heart beat, beat,” to tell us it was beating too fast and her second sentence was, “Heart okay.”  The caring and dedicated staff at the Variety Children’s Heart Centre became part of our family in so many ways. 

In November of the year she turned five, Robyn returned to Edmonton’s Stollery Children’s Hospital for a second surgery to correct her arrhythmia.  After a successful procedure, we came home and waited with baited breath to find out if our heart journey was really over.  After a seemingly endless wait, we returned to the Heart Centre to be told that her repair was successful and she would no longer require ongoing care and monitoring.

That same fall, we learned that Robyn was granted a wish through the Children’s Wish Foundation.  Robyn’s wish to go to Disney World and take her sister to Bibbity Bobbity Boutique came at the same time we learned of Robyn’s need for a second medical trip to Edmonton for her heart repair.  We began planning the two trips together, with the planning of Robyn’s trip to Disney taking the edge off of her anxiety towards the trip to Edmonton and a hospital stay.  The timing of Robyn’s wish allowed our family to close the chapter on this life experience in a very special way.

From the minute we received our pre-trip package from the wish coordinator, the magic began.  Our daughters spent countless hours pouring over the Birnbaum Guide Book to Disney World and watching the Disney DVD as they planned their adventure.  Finally the day arrived and we brought our bags, which had been packed for weeks, to the airport in Winnipeg, ready to begin our Disney experience.  Our arrival at the Orlando airport continued the magic as an airport greeter held up a card with Robyn’s name.  She turned to us and asked, “Is that me??”  Robyn was treated like a royal princess from that instant throughout the duration of our holiday.

Give Kids the World village was truly a magical place for not only our special princess, but the whole family.  We met so many wonderful and caring volunteers as well as many families from all over the world.  Every minute at the village was full of magic and excitement.  We enjoyed everything from Ice Cream for breakfast (and lunch and supper!), visits with Mickey, Minnie and many other special characters to Christmas and gifts from Santa, a birthday party for Mayor Clayton and surprise gifts at our villa each day.  We could have spent the week at the Village alone.  There just never seemed to be enough time to spend playing in the Candyland playground, enjoying breakfast and supper in the Gingerbread House restaurant and ordering take-out from Katie’s kitchen or late night pizza, playing in the pool and splash park, fishing in the pond, riding the train, playing with the model train set, driving the remote control boats and playing mini-golf.  Somehow we managed to fit this all in between visits to all three Disney parks, Universal Studios and Sea-World.  No wonder we came home exhausted!

Our two princesses, both Robyn and her older sister, Rebecca enjoyed a very special experience, not only visiting the Magic Kingdom, becoming a part of the magic with their princess costumes, hairstyles and makeup.  They enjoyed fabulous experiences at each Disney Park along with Universal Studios and Sea World.  Rebecca’s own wish came true as she got to meet and feed a dolphin named Jack at Sea World!  Robyn’s wish trip allowed us to spend time together as a family and was our first family vacation together in the six years since Robyn’s birth.  We found ourselves looking for the magic each day of our holiday as we remembered how to relax together and celebrate life.  Robyn’s Disney Wish brought the magic back into our lives.   It was a truly memorable experience for every one of our family members.  Our time at Give Kids the World Village allowed us to create a shared experience and family memories based on Disney Magic and the Magic of each of the caring individuals who worked together to make this possible.

Robyn is now an active and busy twelve year old girl who loves to figure skate and tap dance.  She loves skiing, fishing with her dad and camping with her family along with watching cooking shows and baking with her mom (especially cookies!).  Robyn loves to draw and write stories, and plans to figure skate in the Olympics and write famous novels when she grows up.  Her wish trip has left a lasting and deep impact in her life as she continues to fundraise for the Children’s Wish Foundation, donating her birthday money every year, more than $600.00 to date.

Nathan was born with a congenital heart including an aortic root aneurysm and bicuspid aortic valve.  Over time his aneurysm enlarged and in June 2016 he needed heart surgery in Edmonton.  This was a very stressful time for Nathan and for our family.   Shortly before his surgery, he learned that he would have a wish. Nathan was so excited, and imagining the possibilities made it easier for him to cope with his surgery and recovery. He was thrilled to hear about Give Kids the World and is very much looking forward to the adventure!