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on childhood diseases

The magic of research for children's health

Children are our collective treasures, our raison d'être. Research constantly strives to find solutions in order for them to live a healthy life.

« I would do anything in my power for the health of my little brother!»

After our daughter, Sophia-Rose, was born prematurely, we thought we would never have to go through such anxiety again. We were mistaken. Our son also arrived prematurely, at 30 weeks, weighing 1.4 kilograms. But while our daughter grew up healthy, Jayden wasn’t so lucky. During the very first hours of his life, he had severe brain hemorrhaging. He was kept under observation, but since his state of health did not deteriorate, risky surgery was avoided. We had no idea how our son would develop and if he would be gravely affected.

Over the months, we were relieved to see that his cognitive capacities were intact. However, his arm movements were jerky, he was unable to sit up and his legs could not bear his weight. At that time, we also realized how strong our little guy was, and how determined he was to stand on his own two feet!

Since the age of nine months and today still, Jayden has undergone two to five physiotherapy and occupational therapy treatments every week. The use of his arms has returned, and by the age of two, he was able to move forward a little on all fours.
To make his growing legs a little more flexible, during his entire growth period he will alternately receive Botox injections and medical treatments that consist of making tiny incisions in his calf muscles. Every time, these operations leave Jayden in plaster casts for six weeks, and afterwards he has to learn to walk all over again.

But our little man has a will of iron. Jayden is only five years old but has so far learned to walk four times! As parents, we place great hope in research. Already, it has shown us that it is possible to improve the condition of children like Jayden who live with lasting effects of premature birth.

Childhood is short and precious. When a child has to sacrifice a part of him to fight against disease, we all feel the horrible injustice of the situation. In May 2011, when he was only 5 years old, doctors discovered that Samuel was suffering from a brain tumor. Seven months later, he tragically lost sight in his right eye. Since then, physicians have operated on his brain six times, carried out four chemotherapy regimens including an experimental one, without actually countering the tumor growth. In January 2016, Samuel began a fifth chemotherapy protocol and is hoping for success. Since Samuel's disease is very difficult to treat, we know that the road to recovery is still long, but our main hopes are based on research.

Doctors and researchers still have a lot of work to do to understand how brain tumors form and to find the best treatment for each child in their care. This is why it is vital that people continue to support the Foundation of Stars.

"My dearest dream is that one day my tumor disappears and that all sick children get healthy," states Samuel, 10 years old.

For Samuel and all children who must endure pain, injections, surgeries and isolation without losing hope for healing, time is short. And the only way to offer them the gift of time is to support research. That is why we appeal to your kind heart to help us keep our promise to sick children.

"Samuel, please keep your joy in life. You are a source of inspiration for us. We are proud to be the parents of a boy as brave as you. You continue to amaze us with your great strength fighting this disease and also with your talents as a singer and musician!” Samuel’s parents proudly say.

Daniela

Daniela - a life without leukemia

1er June 2015

Daniela is 19 years old. When she was 14, she learned she had acute lymphoblastic leukemia. Her life will never be the same again, and while she’s now in good health, the hardships she has been through cost her dearly.

After her diagnosis, Daniela underwent intensive chemotherapy for nearly three years. And even though she dreamed of going to school and spending time with her friends like any teenage girl, she had to face up to taking medications with side effects that were exceptionally harmful – even toxics, and grieve over the loss of the long, curly hair she was so proud of.

Today, Daniela is in remission and that endless period of suffering is now behind her

But she feels it’s vitally important to talk about what she’s been through to encourage people to give for the cause. So for many months, now, she has given freely of her time to the Foundation of Stars as a living witness at fundraising events.

She’s especially thankful to the doctors who know what she and her family have been through and, as she says, “Most of all, it’s thanks to research that doctors have the chance to make a difference so there are stories like mine that have a happy ending. Being sick changes you, and makes you grow up faster than you should, but it’s because of help from people who donate that sometimes — often, even — a child's life is saved,” she explains. And she adds, “No doubt about it, donations helped save my life and they’ll go on saving and improving the lives of other children with serious diseases. I will never have the words to express just how much donors have given me!"

In the last few years, pediatric research in Québec has advanced by leaps and bounds. Daniela is a perfect example and her zest and joy in living are an inspiration not only to her friends and family but to everyone who meets her.

Latest news about Daniela:

  • Today Daniela is healthy
  • She started studying at the Cégep and would like to continue in education
  • Being a very generous person and grateful for all the support she got over the years, Daniela tries to give back by helping the Foundation of Stars

Mathieu – life with cancer

August 1, 2013

Mathieu is a very brave 13 year-old boy. In mid-April 2009, at the age of 9 years, he complains of pain in the arm and lungs, but blood tests reveal nothing abnormal. Doctors encourage Mathieu and his family to return home, thinking that everything should return to normal within a few days.

However, Mathieu never got better and on April 22nd, 2009, he is hospitalized at the Montreal Children’s Hospital. The diagnosis: Mathieu suffers from a cancer called lymphoblastic lymphoma.

This is the same cancer that Saku Koivu suffered from. Chemotherapy treatments begin quickly because his life is at stake. Treatment protocol is two-years of chemotherapy sessions once a week.

At first, all goes well and hospitalizations are rare. Mathieu even returns to school after one year of treatment.

Sadly, in October 2010, he suffers a relapse! More aggressive, the cancer grows in just 24 hours.

After two radiotherapies, doctors are able to reduce the mass and chemotherapy begins again on a regular basis. In 2011, a bone marrow transplant from his sister Valerie Mathieu allows to live at 22% of his lung capacity, but with a paralysis of the left diaphragm.

Mathieu undergoes another operation in January 2013. He is currently suffering from a skin problem in response to a bone marrow transplant, a GVH. Mathieu is waiting for a new treatment, a form of dialysis to treat white blood cells that is only available in Toronto for now. Mathieu, his sisters and parents hope with all their heart that this treatment, the result of years of research, will finally allow him to live a normal life.

Mathieu’s story is a good example of the importance of research and the continual need to advance and find innovative treatments for complex diseases.

Latest news about Mathieu

  • Mathieu plays golf and has even attended two tournaments in July and September last year!
  • He has begun school in early September 2013, at home.
  • Today Mathieu is somewhat well. He has beaten two cancers and is in remission thanks to an experimental chemotherapy, but he still has to undergo treatments every two weeks in order to improve his lung condition


Sabrina – life with two diseases at the same time

March 13, 2013

Since the age of six, Sabrina is suffering from two specific diseases: one is a dangerously reduced heart rate and the other affects her intestines and is called a pseudo intestinal-obstruction.

When her heart disease is diagnosed, Sabrina’s heartbeat is sometimes as low as 20 beats per minute, while in a healthy child it would be about 70 to 80. She is hospitalized for several months in the CHUL mother-child center where she has a pacemaker installed, which is replaced three times over the years.

To overcome Sabrina’s intestinal problems, several steps are necessary, including ileostomy or a stoma. This treatment is used to connect the ileum to the outside, through the wall of the abdomen. She now has only 15cm of bowel function and endures daily pain and suffering.

When I manage to eat, I can eat what I want, even chocolate desserts, which are my favorite. But I must receive intravenous nutrition every day.

Sabrina is a young woman who loves to have fun, dance, sing and laugh as all friends of her age do! However, it is very difficult for her to plan activities in advance because she never knows if her condition will allow her to do what she wants to.

In 2012, she spends six weeks at the hospital in June and July, and has to be operated (on) again in October. She frequently returns to the hospital for infections that require hospitalization and intravenous therapy. Sabrina strongly believes in research, particularly the genetic research team of Dr. Philippe Chetaille, pediatric cardiologist at CHUL. She is hopeful that they may find ways to improve her conditions.

"I like to imagine a few days without pain, at school with my friends, able to do one of my biggest dreams: figure skating! " Sabrina explains. "You know, my illness affects my whole family and is very expensive and my parents spend between 5 and 10 thousand dollars a month ... just for me!"

She adds: “I believe in the magic of research… but I find it sometimes takes a little while to happen”.

Latest news about Sabrina

  • Sabrina is doing better and is suffering a lot less, considering the fact that she underwent three operations since last November.
  • Her physician, Dr. Andelfinger, works with researchers in Germany to find an efficient and long term treatment.
  • Sabrina won a competition involving students from schools in the Québec region. The subject was to create a foundation in order to raise funds to support pediatric research.