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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.

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 - a life without leukemia

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

Karl – A truly grateful young warrior!

The boy’s 14 cm brain tumour, located in a spot that made it difficult to operate, has shrunk at the speed of lighting thanks to a new treatment!

Karl was 7 years old when he first experienced numbness in an arm. An MRI revealed a tumour in his brain stem which also touched seven cervical vertebrae.

“Operating on this patient, explained Dr. Farmer*, would have entailed making a long incision that might have destabilized the cervical column. In other words, the risk of negative side effects from surgery would have been very high.”

Karl and his parents then met with Dr. Jabado**, a recipient of funding from the Foundation of Stars on numerous occasions, who explained how the new targeted therapeutic treatment could shrink the tumour. “For Karl and other probable young candidates, she noted, this approach is not only promising, but also has fewer side effects.”

Three weeks after beginning the treatment, the tumour had shrunk by 50% and Karl could once again use his right arm. After another year of therapy, the boy’s tumour had shrunk by 88%. This fall, two years into the process, treatment will be halted and if the tumour does not reappear, Karl will be considered cured!

The medication administered to this energetic young boy allowed Karl to recover faster and return to school. No other treatment would have acted this quickly, if at all… The measure, which consists of taking one pill at home rather than having to go to the hospital or undergo perfusions, also greatly improved Karl’s quality of life.

“We are very grateful that he was able to benefit from this treatment,” said his parents.

*Dr. Jean-Pierre Farmer, M.D., C.M., F.R.C.S.(C), neurosurgeon and surgeon-in-chief at the Montreal Children’s Hospital

**Dr. Nada Jabado, M.D., Ph.D., pediatric hemato-oncologist at the Montreal Children’s Hospital

A breakthrough that is making waves!

Brain tumours are now the leading cause of cancer-related deaths among children. The odds of surviving are higher for certain types of these tumours, but the risk of major health effects is still present, particularly because of their location in the brain and the treatment needed to slow their growth.

These tumours include low-grade glioma, which account for 23% of all brain tumours in children. Glioma is a type of tumour that responds well to targeted therapy acting on the main signaling pathway involved in these cancers and also present in children suffering from type 1 neurofibromatosis, an orphan genetic disease that can lead to brain or soft tissue tumours.

The current study hopes to determine whether there are advantages to inhibiting this signaling pathway. Developed to meet an urgent need by Dr. Nada Jabado (Montreal Children’s Hospital) and Dr. Sébastien Perreault (CHU Sainte-Justine), this study, and its extremely promising preliminary results, will be open to all children from Québec and elsewhere in the country.

In addition to her work with patients such as Karl, Dr. Nada Jabado also carries out diverse research activities.

This year saw her once again receive an amount of $200,000 for brain cancer research. She is currently working with one of the best scientific teams in Canada to study the stem cells responsible for the growth of tumours.

« 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.

« I might only be 19, but I'm already a very busy mother. I spend all of my time with Elena, my little princess... She has a neurodegenerative disease whose exact name and cause are not yet known.

My pregnancy was a completely normal one. Nothing hinted at the devastating news we would receive just after she was born. Elena was only two months old when a doctor noticed a delay in her development. That started a never-ending battery of tests and exams and the always-increasing anxiety of wanting to know 'what' and 'why'... During one of these tests, our neurologist, Dr. Chrestian, noticed that our four-month-old daughter couldn't follow objects with her eyes. It was, unfortunately, one of the first signs that her brain was affected by the condition. Although Elena is now two years old, she has never progressed past the developmental milestones of a baby who is a few months old. She cannot walk and will probably never speak. She needs help to eat. But she recognizes us and gives us the most beautiful smiles in the world!

Since the doctors told us that there would be no improvement for Elena, I make the most of every moment with my darling daughter. Every minute is a precious gift. I am assured that her illness does not cause her any pain. I want to believe this, because even if Elena is unable to express how she feels to me, I can see that she is happy.

Her illness, however, causes her an immense amount of fatigue. The more the disease evolves, the more Elena needs to sleep. In the words of one of the doctors, her fatigue is comparable to that of how a person who has just completed running a marathon. Last September, I took part in a race organized for the benefit of the Foundation of Stars — I thought it would help me gain some understanding as to what my daughter experiences. What a challenge! Each difficult step I made in my daughter's honour, steps that she will never have the opportunity to take on her own... And I felt it: the fatigue that inhabits her life on a daily basis! I have no idea how she is able to keep smiling every day. Elena takes medication to reduce muscle stiffness. Every week, she meets with a care team who monitors her physical comfort. Dr. Chrestian continues to follow her as part of a screening program for rare genetic conditions, a research project that you contribute to when you make a donation to the Foundation of Stars. In just a few months, his team will be able to identify the gene involved in Elena's condition. These researchers are working hard to ensure that the hope my husband and I have of expanding our family stays alive. That is why I am inviting you to donate to the Foundation of Stars, today and every day that you might have the chance. Soon, your generosity will help children, like my beautiful little Elena, to have the chance of growing up and knowing their future brothers and sisters. **Thank you for giving hope to families like ours! **»

Carolanne Fillion-Mariage
Mother of 2-year-old Elena, who suffers from a rare neurodegenerative disease

Although we refer to them as rare diseases, the fact remains that when classified together, 1 in 5,000 Canadians is diagnosed with one of these diseases - that is a significant number. In addition, 75% of these affect children...

Dr. Nicolas Chrestian, neurologist

The latest news on Elena and her family...

Today, the family's doing very well.
Last September, they found out what was wrong with Elena. Elena is currently the only one in Canada and also in many other countries to have this disease.This disease was only discovered in May 2019. After tests on myself and my partner, we learned that we were both carriers of the specific gene.

Elena will have a new and important role this summer as she’s being promoted to big sister in July 2020.

The disease that she has doesn’t even have a name yet as it is still so unknown. We only know that it is a gene on chromosome 9 that is affected. The gene AGTPBP1.