Ambassador Kids

2020 - Meet Arianna

Ride for SickKids Ambassador 2020

Arianna was Born September 10, 2012, beautiful baby girl which we thought was healthy as can be. During the first year of her life, Ari suffered from which we were told multiple viral infections. Finally, Ari was sent to see Dr. Hughes for her first diagnosis of a heart murmur on June 12, 2013. AJuly 10, 2013, we received the call to bring Ari to SickKids ASAP and they performed her second catheterization on July 12, 2013. This Echo revealed the worst news, they confirmed the diagnosis of Tetralogy of Fallot.

July 15, 2013, Ari underwent her first Angioplasty (stent to open vessels for more blood flow) during this procedure, she went into cardiac arrest and ended up in the cardiac critical care unit for four days. Now with a stent in her pulmonary artery, she was to wait and grow until her correctional open-heart surgery in September 2014. But that did not happen. After her usual monthly appointment on December 12, 2013 for a sedated Echo, woke up blue. We rushed her to Northumberland Hills hospital to find out that her oxygen levels were only 42% and she was rushed back to SickKids. After two days and careful watch, they chose to do another catheterization despite her fever. They discovered the stent was no longer helping and the next day on December 18 they performed a 22 hour long open-heart surgery. During this surgery, the surgeon found another anomaly called MAPCAs (her body grew its own vessels to accommodate blood supply to her lung).

After 35 days in critical care, we went to the cardiac unit for two weeks then finally came home on February 2014. Over the course of 3 years, Ari had multiple catheterizations, SickKids appointments, echoes and ECGs. In March of 2016, she was hospitalized at Peterborough hospital for one week with pneumonia. She recovered without any complications.

Her second open heart surgery was February 8, 2017, with complications that arouse, she then needed two more open heart surgeries. We were there for another long visit. She had stayed in the cardiac critical care unit until February 28/17 and underwent a lot of physio and other interventions while there. Finally, was discharged to the Ronald McDonald house on March 6, 2017, and she did great. Then from there we came home on March 9, 2017. This time Ari came home on a feeding tube (complications from being intubated) for two weeks at home. Since then, she has had appointments and catheterizations every year, her last catheterization was the longest she has gone without any intervention as of November 21, 2018.

Over the last couple of years, Arianna has grown and thrived since her last procedure. Ari is a strong willed, smart, loving human being who loves to dance and sing her little heart out. Recently Ari has shown a huge interest in doing her own hair and lipstick (like Mommy) and swimming. After everything Ari has been through, she says she hopes to become a doctor and work at SickKids when she is older.

-As told to us from Mom, August 2020

 

Arianna with the RFSK Crew, August 2020

2020 - Meet Nathan

Ride for SickKids Friend 2020

From the day he was born, Nathan (Costante) Hutchinson has beaten the odds in fighting several life-threatening cardiac diseases by undergoing two successful open-heart surgeries, catheter therapy and numerous other procedures.

Nathan was also born with two separate lung diseases and combined with the progression of his Pulmonary Vein Stenosis it soon became apparent that Nathan needed a “double lung, pulmonary vein and partial heart” transplant.

Nathan was quickly listed to be a recipient of donor organs and shortly thereafter he was miraculously given the greatest gift anyone could receive and underwent a 12.5-hour transplant surgery in hopes of beating the odds once again.

The surgery itself went well and recovery was going as expected but several days after the surgery Nathan’s parents, Justin and Crystal were made aware of some complications that were not allowing Nathan to breathe on his own. Nathan is currently recovering with respiratory assistance after undergoing a tracheotomy. He is now at home with his mom and dad living his life to the fullest!

“Will he ever be without a trach? Simple answer is we don’t know. It honestly doesn’t even matter. What matters is Nathan is happy and thriving. Everyday we wake up and see his smiling face is a gift and we are grateful for him. I don’t want to hold him to any kind of expectations, if one day he is decanulated it’s just an added bonus. We will love and support him no matter what. There’s nothing wrong with him needing a little extra help to breathe.”

-Crystal Costante (Nathan’s warrior mom)

https://nationalpost.com/news/canada/nathan-turns-two-after-surviving-a-double-lung-transplant-open-heart-surgeries-and-a-covid-19-outbreak

2019 - Meet Jadarose

Hello my name is Jadarose Jenner, I’m a 14 yr. old osteosarcoma Cancer survivor. Before my diagnosis I was a very athletic teen I loved playing Basketball, volleyball, soccer and Track n field until I hurt my knee backflipping on my trampoline. For almost three weeks I thought the pain and swelling was from all the sports I play and from just everyday use. After an x-ray, biopsy and a couple of scans it revealed the tumor that was growing on my knee. I was scared just like any other human being would be when finding out they or their loved one had a cancerous tumor in their body, but I knew it was only going to make me stronger. After a couple months of Chemotherapy, I began my preparation for my amputation to save my life. The amputation I chose was the Rotation Plasty. At first, I was freaked out because the surgery would mean that part of my upper thigh and knee would be amputated and then from my lower leg to my foot would be brought back up and reattached 180 degrees to the rest of my thigh. Even though now I may not look like rest of my friends and my foot may no longer be my foot but my knee I still am the same Jadarose that I was before. I am gradually walking with my prosthesis and a little help from my cane but I can say that I am getting the hang of it. Sports have been the most eager thing I have been wanting to start again. I miss playing those quick basketball games with my brothers and friends to see who’s better at ball and not trying to brag but I always won. I played sports mostly on school teams and of course with my brothers. I shot at the net just a couple of weeks ago at school and it may have not been as special to other people like it was to me but it made me accept myself and differences even more. Just wait till I master walking and running in my prosthesis you’ll see me down the court about to shoot. I understand who I am now and all the questions that come with having a prosthetic leg and that’s okay because I know that despite my differences I can do whatever I put my mind to. My illness may have caused a lot of pain to my family and I but however it still made me 10 times stronger than ever. I got to play the game of life for a few months and since June 8th I’ve been able to say cancer took the L!!

-Jadarose’s speech, Ride for SickKids 2019

2018 - Meet Isabella

Ride for SickKids ambassador child 2018

Isabella’s journey with SickKids began 5 days after she and her twin sister, Olivia, were born. After taking a quick look at Isabella’s heart, the cardiologist rushed her to emergency at SickKids. It was there, her family was told that Isabella had a congenital heart defect called Right Atrial Isomerism. It meant that her heart hadn’t formed properly, she only had one ventricle and one atrium which basically left her with half of a normal heart. They were told that she would need 2 if not 3 open heart surgeries in order to survive. This condition also affected many of her organs, which were oddly shaped and placed, and she did not have a spleen. At that point she didn’t need surgery, but the family came to learn quickly that things can go from bad to worse with a heart baby. A few weeks later that is exactly what happened.

Isabella was rushed to the CCU due to rapid decrease in oxygen saturations. A day her family will never forget.  Isabella had several desaturations that did not respond to oxygen which caused her to go into cardiac arrest. She was rushed on to ECMO, which is basically a life support and had to remain on ECMO until she could be brought into emergency surgery for a BT shunt the next morning. Thankfully, Isabella and her family were back home in 2 weeks. After that surgery they had to adjust to a feeding tube, oxygen saturation monitor, and 8 different medications. It was a tough few months but with the support the team at Sick Kids and their amazing family, Isabella got better each day and was growing.

Five months later they were back at SickKids for her 2nd open heart surgery, her Glenn procedure. This time her recovery was much quicker and she, as promised by her nurses, was a “brand new baby”. Her saturations were higher, she had more energy, she came off the feeding tube within weeks and began slowly catching up to her twin sister Olivia, in regard to crawling, eating solids, walking, and talking.

Her third and final surgery was in March of 2014, a few days after her 3rd birthday. She had grown and gained weight over the last two years and was ready for her 3rd open heart surgery; the Fontan procedure. This third surgery was actually the hardest one. Isabella was older now, so she was more aware of what was going on. She and Olivia had developed a special bond and were inseparable. Now they had to be apart for a few weeks. It was hard on the whole family but they made it through stronger than ever.

That was a little over 6 years ago. Since then, Isabella has defied all odds. She dances competitively, runs, swims, sings, rides her bike, plays make believe and simply never stops moving!

“I am thankful each and every day to everyone at SickKids. The surgeons, the nurses and the support staff. We made special connections with her nurses in those first few months and still keep in touch. Those are lifelong friends we have made as they too saw Isabella at her worst and are proud and happy to see how far she has come.”

Danielle Tersigni, warrior mom

This heart warrior is now 10 years old and although her journey is far from over., she is a determined, smart, beautiful, energetic and a happy little girl. The Tersigni family will forever be grateful to SickKids for giving her a second chance at life.

  

 

2017 - Meet Antonio

Ride for SickKids Ambassador Child 2017

On May 21st 2009, three weeks ahead of schedule, Antonio decided to make his mark into the world. From day one, he was a beautiful, energetic, strong, healthy and happy baby and perfect in every way!

Fast forward to Christmas 2013, the family’s life took a completely unexpected turn. Antonio started to complain that he was not feeling well, that his bones were aching, head was hurting and exhibited common flu like systems. On January 20, 2014, in the SickKids emergency department, a series of tests, most importantly a blood test, would confirm their worst fear imaginable-Antonio was diagnosed with Acute Lymphocytic Leukemia (ALL).

Antonio’s parents were faced with gripping shock and fear when their four-year-old son said, “don’t cry mommy, I’m not going to die”. At that moment, they found the courage and strength they didn’t know they had and never looked back… Because if a precious baby can remain positive at a time like this, then you have too as well.

For the next 3 years and 3 months their journey consisted of 1185 days of chemotherapy (or 19 rounds!), 45 nights in the hospital, 26 lumbar punctures, 2 MRI’s and 1 port.

“But I can tell you with complete certainty, there is no other hospital and staff that I would want to look after my son but the nurses and doctors at SickKids.” Says Antonio’s mom Rosemary. “As a parent you always want your child to become something bigger and greater than you can ever imagine. He has inspired so many with his strength, bravery, courage and zest for life. And he has done so with determination, grace, and class and always with a smile on his face. I just did not realize that this would come as Antonio was going through childhood. If we can all go through life’s obstacles like him, we would all have a better understanding on how to live life to the fullest, each and every day.”

Antonio is now a thriving twelve year old boy!

2016 - Meet Isabella

Ride for SickKids Ambassador Child 2016

My name is Isabella Zinga. I am 16 years old. I was born on July 18, 2000 at St. Joseph’s Hospital in Toronto.  When I was born, I am told that my fingernails and lips were purple in color and this is how my story starts. I was transported by ambulance to Sick Kids and had several tests done before I was diagnosed.

I was diagnosed with Transposition of the grand arteries (which means they were backwards), I had 2 holes in my heart, my aorta was too thin, and I had too much muscle tissue.  My surgery date was scheduled for August 1st, 2000, which is now considered “Heart Day” to my family.

From what I am told my surgery was 7 hours long and a great success thanks to Dr. Van Arsdale and his operating team. I spent one week in intensive care and healed rather quickly to everyone’s amazement.

I used to go to sick kids for annual visits from the ages of 1 to 10 years old. Now I go every 2 years. That is a good sign when they start to space out your visits. I have met many nurses: Some nice and some funny. Many doctors have taken an interest in me like I am a science experiment always asking to listen to my heart. I always used to say yes until I got older than I was only seen by my cardiologist.

I have lived a normal life like any other 16-year-old. I have achieved goals that I have set for myself. I have never received special treatment- Nor did I want it.

If we did not have Sick Kids Hospital being the most amazing place for kids; many children would not have survived their illnesses. They perform miracles every single day. Not only did they help me, but they also helped my parents deal with my illness as well as my recovery and the emotions that followed.

My name is Isabella Zinga. I am a Sick Kids baby, my family’s miracle and a survivor.

Isabella Zinga, written July 2016

2015 - Meet Braden

Ride for SickKids ambassador child 2015

Braden was born by caesarean section on Friday June 1, 2014. During a traumatic delivery, Braden was deprived of oxygen for 10 minutes and struggled to breathe. At about 7 hours old, Braden was airlifted to SickKids and put into a hypothermic state to stop any brain damage that may have occurred during delivery. He was on this “ice bed” for 72 hours and tests showed no brain damage. It was about 24 hours after he got to SickKids, they had found that Braden was born with a heart defect called “Tetralogy of Fallot” which is the most common severe heart defect. At 3 weeks old Braden underwent his first open heart surgery for his full repair. Finally, after 3 weeks recovery Braden came home. When he was 3 months old, Braden underwent his second open heart surgery to make his pulmonary arteries bigger to allow more blood flow to go to his lungs.  From then until now Braden has had two cath lab procedures and is doing great. He goes to SickKids every two to three months for his check up.  We know that he will have another open-heart surgery in the future, but he is coping well now so no need for it yet.

Nicole King, Warrior Mom, written in 2015

Update: Braden recently underwent his 3rd heart surgery and is thriving!

2014 - Meet Abby

Honorary Ride for SickKids Ambassador Child 2014

We asked Abby to be our Ambassador Child and she responded with his sincere, heartfelt letter.

I am a 10 year old girl my name is Abby. I am in remission now, but it was a long road to get here. I was diagnosed with leukaemia when I was 18 months old, my mom was told I had weeks to live. She stayed by my bedside in hospital, held my hand and fought for me. I got a bit better, but relapsed again. This time I needed a bone marrow transplant but there was no match, not even my parents.. A couple months later, the hospital did tests and found out my brother who would be born in July was my miracle. We used his stem cells and I got stronger. I spent a lot of time in hospitals over the years, met a lot of friends and watched as some of them passed away. A few years ago in 2011 I wanted to do something so I raised money for the ride for sick kids and my mom made the trip to take it to miss Nella on ride day. I wasn’t well at the time, she brought me home a bandana I wore it all the time, until I lost it :(.

I still go to hospital for tests and stuff because I have seizures and stuff now so I can’t be there but I wanted to tell you my story so you know that you aren’t taken for granted. Raising money, taking time out of your lives to help the hospital and doing what you do, you are all heroes. I want you to know the hospital does great things, not all of us can get better, I wish we could. I know I could relapse again… I live knowing that every day. I used to do public speaking for cancer awareness with my mom but it makes me sad to talk about it because fear comes back, and when I get sad my mom gets afraid. I don’t want to speak in front of people anymore because then I get panic attacks. we stopped speaking because mom got really sad each time [content removed to protect family’s privacy]

I would be there today but it’s too hard to talk in front of people now, but I am thinking of all of you on this day.

You are heroes riding to help so many children like me who are sick for so many reasons, helping so many parents who would go to the end of earth for their kids. People asked me before why I raised the money that year if it wasn’t getting me anything, I said it’s giving me pride. I did something good not just for the hospital but for my friends who were there and to honor my friends who had passed away. Keep doing all your good work miss Nella, you and the riders are amazing people. Smile there should be more people like you in the world. If I could ask for one thing, I know I have no right to and maybe it’s wishful thinking but how awesome would it be if every rider went to www.onematch.com and registered to be a bone marrow donor. Or maybe next year you could have a booth set up for riders to do the swab. If they do that. Not that you aren’t already heroes, but you could save someone’s life.

I’m sorry I am rambling, mom says I’m a chatterbox. Thank you everyone for everything you do. I hope the weather is beautiful and the warm sun shines on your faces. raise lots of money, hug your kids close, tell everyone you love them, have a great day and please Ride safe, I’m sending my angel friends to watch over you so don’t ride faster than they can fly. I’m sending lots of love, I will be watching for pictures on Facebook.

Thank you again for all that you continue to do, you truly are my heroes.
With a happy heart and lots of love
Abby De Elli

2013 - Meet Ashley

Ride for SickKids Ambassador 2013

“My name is Ashley Rose. I’m 21 years old and a fourth-year student majoring in theatre at York University, specializing in Devised Theatre. I like to sing, dance, and I come from a very large family. I like to spread positivity and want to use my own story to educate people, particularly youth, about the reality of HIV/AIDS.”

Ashley was born addicted to crack and with full-blown AIDS.  At two weeks of age, she suffered a broken jaw and fractured skull.  At six weeks of age, she developed a severe case of pneumonia and suffered cardiac arrests.  Ashley was lovingly cared for by doctors and nurses at SickKids Hospital while she was in a coma for three and a half months.  When she awoke, Ashley had no immune system and a disease that was consuming her tiny three pound body.  She was placed with her adoptive family, The Murphy’s, for palliative care.

Against all the odds, Ashley thrived with her loving new family. She became an honour-roll student who enjoyed singing with a band in her spare time.  She has done a lot of volunteer work and public speaking to spread awareness and reduce the stigma of living with AIDS.

Ashley with her family, the Murphy’s. A remarkable family that has fostered and adopted 10 children with special needs.  A family whose first home has often been SickKids.

I was born in 1998, when Canada had the medications and the ability to ensure that almost zero babies were born with HIV back then. I should not have HIV. But I do. Now these life-saving medications can be available everywhere. If we work hard, we can make sure that no one, no matter where they live, is born with HIV.”

Ashley Rose Murphy speaking at the UNAIDS fundraising gala, Geneva 2015.

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