The Cassandra Against Leukemia Association was created after little Cassandra was diagnosed with leukemia, when she was only two months-old.
Its main objective is to raise awareness among as many people as possible about life-saving donations of blood, platelets, plasma, umbilical cord blood, and bone marrow, and about infant leukemia. But it doesn't stop there.
The association is committed to the fight against pediatric cancer, and like the association Eva pour la vie, actively participates to a parliamentary program dedicated to addressing cancer and childhood leukemia — which is chaired by Gironde deputy Martine Faure.
The Cassandra Against Leukemia Association was established in October 2015, eight months after the girl was diagnosed. As soon as Cassandra's illness began, her parents started a Facebook page dedicated to her battle with cancer. The goal was to give a face to infant leukemia and to raise awareness about blood donation.
Cassandra's Facebook page received so much attention that the parents were propelled to start fighting infant cancer at large.
"Today, despite the passing of Cassandra, the fight continues, because there are still many children to save," they posted on Facebook.
Xavier and Elodie were overwhelmed with the incredible support they received from people they didn't know.
"Thousands of people have recognized the importance of blood donations, through Cassandra's Facebook page, or through the association. We have received thousands of anonymous notes from people telling us that they have decided to give blood for the first time, or to register as bone marrow donors because of Cassandra. In certain departments, the EFS (French Blood Establishment) also noted a significant increase in the number of blood and bone marrow donors in the days following Cassandra's death. This is was what we were fighting for, and what we will continue to fight for," they wrote.
If we look at global statistics, we would see that leukemia is one of the least fatal cancers, including for children. Unfortunately, this is not the case for younger children, and even less so for infants. Cassandra was given experimental treatments, including chemotherapy and immunotherapy; there is no conventional protocol for infants and young children with leukemia.
Those who claim that leukemia "has a good prognosis" totally forget about the hundreds of babies, children, and adolescents who suffer.
"There are months, even years of hospitalization, getting chemotherapy, spinal taps and myelograms, not counting the side effects. The children who are lucky enough to overcome it, a small number, will be affected for life," Xavier and Elodie explained.
Like most parents, Cassandra's parents could never imagine that their daughter would get cancer, let alone die from it.
"I had never really asked myself the question. It is difficult, especially in France, where we often hide these things, to become aware of it. The action of associations fighting against pediatric cancers, such as Eva Pour la Vie, is essential in raising public awareness, and enacting policies," the said.
"When we give blood, plasma or platelets, we are saving a life! When a patient receives a blood pouch, it is because they are at risk of dying. Over the course of her short life, Cassandra received around 50 blood pouches. During the final days of her life, she received one pouch of blood a day," Xavier and Elodie said.
But it's not only patients with leukemia who benefit from these donations. There are dozens of illnesses or cancers that necessitate regular transfusions. Any of us could one day need a blood or platelet transfusion. Artificial blood does not exist. Only blood donations can save lives.
Unfortunately, there is a lot of misconceptions around bone marrow donation. Many people do not even distinguish between bone marrow and the spinal cord. When a bone marrow donor is called upon to save a life, the bone marrow is extracted from the pelvic bone (in 30 percent of cases), or directly from the blood (in 70 percent of cases).
Pharmaceutical laboratories invest very little money in researching and finding treatments for children, perhaps because they consider it to be a less profitable endeavor. Only a couple of thousand children are diagnosed with cancer or leukemia in France every year -- a very small market by their standards.
"I am less upset with the pharmaceutical laboratories, which are private corporations, than with the state that should take measures where the private sector doesn't want to intervene for reasons of profitability. It's the state that should take charge of research into rare diseases and pediatric cancers. The state has the means to intervene. It's just a question of political will."
At the end of the year, the deputies in the National Assembly should vote on a bill proposed by Deputy Martine Faure. The goals include allocating funds for research on pediatric cancers and infant leukemia and improving aid to families dealing with childhood illnesses. There are also educational and pedagogical objectives.
The parents of Cassandra eagerly await the outcome of the vote.
"There are thousands of families who are devastated by serious childhood illnesses each year. Our children die in hospitals amidst total indifference, and are denied proper treatments. However, they are the future of our country. I cannot imagine that our representatives, on the right and on the left, will allow this situation to continue for much longer," they said.
This post first appeared on HuffPost France. It has been translated into English and edited for clarity.