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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.

Mélanie Grégoire, maman du petit Laurent, nous raconte l’histoire de ce petit garçon courageux.

« “Trente semaines, la science est rendue là. C’est à cette phrase, prononcée par le Dr Étienne Fortin-Pellerin et confirmant qu’il y avait de l’espoir, que je me suis accrochée durant les 60 jours où mon fils est demeuré hospitalisé aux soins intensifs.

Mon fils Laurent est né prématurément. Une expérience douloureuse. Il y a d’abord eu le choc de devoir accoucher sous anesthésie générale, puis les questions, terriblement angoissantes : “Mon enfant va-t-il vivre? Si oui, dans quel état?” Un sentiment incontrôlable de culpabilité s’est installé en moi.

Il m’a fallu attendre une journée entière avant de voir mon bébé d’amour! Il était intubé de partout, et je ne pouvais pas le prendre dans mes bras. J’étais bouleversée.

C’est là que le Dr Fortin-Pellerin m’a dit que grâce aux avancées de la recherche, il pourrait “réparer” les poumons, trop petits et trop rigides, de mon fils. Si vous saviez le soulagement et la gratitude que j’ai ressentis!

Pour moi, tout est clair maintenant : c’est parce que des gens comme vous donnent pour la recherche que mon Laurent a pu s’en sortir. Aujourd’hui, c’est un beau bébé plein d’énergie!

Je suis reconnaissante à tous les donateurs de la Fondation.

Merci du fond du cœur de soutenir les familles qui doivent composer avec l’inconnu que suppose une naissance prématurée et qui s’efforcent de garder espoir en l’avenir de leur enfant. »

– Mélanie Grégoire.

Le petit cœur de Florence tenait à battre même lorsqu’elle n’avait que 22 semaines, raconte son papa, Antoine Halwagi.

« Il y a dans la vie des événements qui nous marquent pour toujours. Dans notre cas, tout a complètement basculé le 12 mai 2021. Comment notre fille pouvait-elle arriver dans le monde aussi tôt? Après à peine 22 semaines de grossesse, ma femme perdait ses eaux. Nous étions sous le choc, vous pensez bien. Dans l’ambulance qui nous conduisait à l’hôpital, notre premier réflexe, terrible, a été de nous dire que tout était fini.

Mais nous ne connaissions pas encore Florence et sa force. Et nous ne savions pas tout des progrès de la médecine. Quand nous sommes arrivés au centre de néonatologie de l’Hôpital de Montréal pour enfants et que j’ai demandé quelles étaient les chances pour un bébé extrêmement prématuré non seulement de survivre, mais aussi de bien grandir, on m’a dit que de belles histoires, il y en avait. Ma femme et moi avons décidé d’y croire. Surtout que Florence bougeait. Son petit cœur battait à l’échographie.

Les médecins ont réussi à la maintenir en gestation pendant quelques jours. Puis elle est née par césarienne. C’est le docteur Gabriel Altit, un médecin chercheur dont la Fondation des étoiles appuie l’important travail en cardiologie pédiatrique, qui l’a mise au monde.

Chez les bébés comme Florence, tout est sujet à complications et source de soucis : le développement du cerveau, des poumons, du système cardiovasculaire… Florence a été intubée, car elle n’aurait pas pu respirer par elle-même très longtemps. Le tube la dérangeait beaucoup, la pauvre, tant et si bien qu’elle l’a retirée trois fois! Tant de vigueur nous surprenait, et nous donnait aussi de l’espoir.

Puis, notre petite a fait une complication cardiaque à la suite de la prise d’un médicament. C’est là que le Dr Altit nous a proposé de participer à un protocole de recherche qui consiste à mieux caractériser, à l’aide d’échographies, la condition des bébés prématurés.

Que Florence ait pu survivre constitue tout un exploit. Sa présence nous remplit d’émotions. Nous savons qu’elle aura des défis. Nul ne peut prédire lesquels. Fort heureusement, la recherche a tellement avancé que les prématurés d’hier, qui sont des adultes aujourd’hui, ne peuvent plus servir de modèle. Grâce à la Fondation des étoiles et au soutien essentiel de ses donateurs, Florence n’aura pas la même vie que les enfants comme elle nés prématurément il y a quelques années.

– Antoine Halwagi, père de Florence.

Daniela

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

« 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.