Lower-Atlantic: Ninon fights every day to overcome his autoimmune disease

Ninon from Villepot (Lower-Atlantic) and her mother Angelina have been working on juvenile dermatomyositis since 2019. © LÉÉclaireur de Châteaubriant

“He teaches us the lessons of life every day,” said mother Angelina Guillemet. “Oh yeah …” Sylvain agrees, Dad, leaning over the dining table and looking away.

The Couple Villepot (Lower Atlantic), The head of a tribe of five children, About 10 years ago their last small treasure gave birth to Ninon.

A sibling mascot for adults Children aged 18 to 25, Those have tightened their bonds a little more since the advent Their younger sister’s illness, then 6 years old, in 2019.

“She’s starting to look red on her cheeks,” Angelina said. “At first we thought it was a make-up allergy because she had just joined a birthday party. A

But Ninon’s condition quickly deteriorated. Six weeks later, the little one lost his footing completely. “He couldn’t sit up anymore. He ate in a semi-quiet position in the armchair.”

1 in 300,000 children

After a few round trips to the local emergency room, Ninon, suffers Significant muscle weaknessA Extreme fatigue And Multiple skin lesions, Is Nantes was taken to University Hospital.

“It simply came to our notice then He was in heart failure. “, I remember my mother. At CHU, the diagnosis becomes faster. Ninon has juvenile dermatomyositis. An autoimmune disease, the most common inflammatory myopathy in children, affecting one in 300,000 children and, to a lesser extent, adults over 40 years of age. “Three children have been infected in the chateaubrient area,” points out Angelina, who met one of them at the Necker-Enfants Malades Hospital in Paris.

Video: Currently on Actu

Ninon also met with Dr. Brigitte Bader-Meunier of the Department of Pediatric Immunohematology, responsible for research into the disease, the origin of which is unknown. On the contrary, Treatment exists and today it makes it possible to completely cure juvenile dermatomyositis. These different therapies for each patient.

Villepat’s daughter followed the two There are those Limited positive effects. “If they reduce the dose of corticosteroids, the disease takes over. Crocodiles that have stopped growing since 2019.

At about 10 years of age, Ninon continues his studies and can go to see his girlfriends despite his illness. © LÉÉclaireur de Châteaubriant

For an expected forgiveness

Since 2021, Ninon has been undergoing experimental treatment. After good first signs, he was attacked again after losing his two grandparents. As Angelina Guillaume notes, “this disease is much more responsive to stress.”

The vaccine against Kovid also had a negative effect on Ninon’s health earlier this year. “He had a big muscle inflammation that prevented him from walking almost completely.” But the small town pot is now taking on a new color.

If the new experimental treatment is finalized, the neon can enter a stage of remission and regain all its power, without a sequel. “Usually it leads to a cure. We were told that the hardest part was finding the right treatment for her. So far she doesn’t have it.”

Despite his illness, Ninon never went out of school. Although most children in her condition are forced to do so. “She’s always been to this school. They know her well. She’s supported by her classmates and the teaching staff.” The youngest’s “power of character” embraces many of the pains and limitations associated with his illness.

“She is OK. He can’t run anymore, he can’t get up when he’s on the ground … he’s a little out of balance. A

“He was very dynamic, he danced, he rode horses, he could make three wheels to follow on the lawn”, recalls Sylvain with a smile. To avoid burns, Ninon must take care to be well protected from the sun’s rays. “Her skin absorbs too much UV. He is also barred from entering the swimming pool due to the presence of chlorine.

A kitten to make your daily life easier

Families and parents have had to adapt since the onset of the disease. The Mom had to quit her job at a store in Shatobrient Being able to take full care of her daughter between physiotherapy sessions, appointments with specialists and daily help. A school life assistant with him Also six hours a week.

To make her daughter’s life easier, she will be 10 years old next August, the family has found her a new tricycle. A means of transportation that allows him to gain autonomy. “Any child with a disability can benefit 100% from a tricycle with a prescription,” the mother said. “So far we have taken pushchairs for our tired moments to visit and walk. A

Ninon, Angelina Guillemet
Ninon carries Marie Laurent’s parrot (on the right) that traveled part of the way to St.-Jack-de-Compostel for her. Angelina Guillaume

The family now wants to buy an electric bath recliner to make their daughter’s washing easier “Ninon doesn’t sit with his legs spread. I have to hold her in the tub and hold her while washing her. A

The father, who has been disabled since 2015, will not be able to replace his wife in this job. This fund New essential tool which costs around 600 €, Angelina and Sylvain can rely on the help of a good angel. Mary Laurent, a resident of St.-Jacques-les-Pins, has offered to walk for their daughter. At the age of 71, he traveled 300 kilometers in twelve days on his way to Santiago de Compostela between Fagric and Saint-Hilaire-la-Palu. (Deux-Sèvres), 16 to 31 May, 2022.

Of Grants are collected Throughout his journey, that’s him He used to live with parrots. “He asked for a grant all the way in exchange for a picture with his parrot,” said the mother A big-hearted walker has also opened an online kitty so everyone can help the family.

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