Alencon. Their baby is fighting a rare disease: they are launching a kitty for his medical care

Maylane is a little girl smiling, manual and intelligent. But at a year and a half, Maylane is above all a little girl who do not lack courage. Born at Alencon (Orne) in January 2021, she is suffering from a rare disease and will soon undergo a ovary surgerya chemotherapy and an bone marrow transplant.

An unexpected diagnosis

To nine monthsthe doctors diagnosed the youngest of the family Blackfan-Diamond anemia. It is characterized by an inability of the bone marrow to produce red blood cells. A “very very rare” disease, according to Cyndelle CottereauMaylane’s mother, and “totally unexpected”.

As soon as she was born, premature, she was taken away from us to bring her to the neonatology service. She was pale, anemic, with very few red blood cells, we were told.

After several months of regular tests and transfusions, the diagnosis falls. “It’s brutal, it turns everything upside down,” delivers the mother, distraught.

Last month, another bad news fell on the small family of three children : Maylane’s body also does not produce white blood cells.

One solution

Maylane undergoes transfusions every three weeks at Caen University Hospital. Today, the only solution is an emergency transplant, “so that she has a hope of healing”, reveals Cyndellewho keeps a cool head, for his family.

The compatibility of the bone marrow of the two older brothers of Maylane, of five and three yearshas been tested, but the results are negatives. “Despite our misfortune, we had a glimmer of hope, because several donors are compatible with Maylane”.

An unreimbursed transaction

To prepare her body for the transplant, Maylane must go through a intensive chemotherapy. She will be infused 22 hours a day for five days: the equivalent of six months of chemo. “She will lose her hair, go through early menopause and become sterile. » A reality difficult to accept for Cyndelle and Steventhe dad.

So when the doctors offer the family an operation to remove one of the baby’s ovariesand freeze it for later, they accept.

But deemed optionalthe operation is not not fully refunded by social security.

For us, it’s so vital, she has the right to become a mother herself. It would be the best thing that could happen to him.

To that, other expensive treatments are added.

Call for solidarity

To share their baby’s story and receive support, the couple created a Facebook group Maylane, our daily fight. In one month, the group has already assembled 450 members. “It warms the heart”, is moved Cyndelle.

Many seniors want to send donations, drawings. I was told one day: you will learn that you have to accept help from outside people, so I created an online kitty for those who want to help us finance this operation.

Home help, Cyndelle had to stop working when the illness broke out. “I had a lump in my stomach all the time”. Steven, on the other hand, works as restaurant manager.

In 25 daysthe prize pool climbed to nearly €2,700 thanks to a fifties of participants, anonymous or not, relatives or strangers. “In this world, there are still people who have a heart”, slips Cyndellewho cannot find the words to express his gratitude.

A first Christmas from a distance

The association A gesture, a dream, a smile also supports the family by gifts and tips.

Everything they do is wonderful. When Maylane is old enough to understand, we will bring out all the drawings, and she will see that she was never alone.

Soon, the appointments will be linked between Caen and Renneswhere the little girl will enter a sterile room to two months “great minimum”.

“She will not make Christmas with us, it will be very hard to live”, confides the mother. A temporary separation that the family dreads. “We are so afraid that something will happen to him. Every evening, we say goodbye to her without knowing if we will see her again. The couple will chain the return trips to Rennes so that neither Maylane nor the boys are ever alone.

“We are incredibly lucky in our misfortune, Maylane is very advanced for her age. She lives in pain, but she has a smile. As Cyndellewho does not lose hope for a moment.

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