Near Toulouse. “Hélia will march”, the struggle of parents so that their daughter will one day succeed in walking
Through Cassandre Garot
Published on
“Your daughter will never walk”. This sentence, Stéphanie and Michel Romero heard it almost eight years ago. And yet they still have refused to give up. Helia, their almost ten-year-old daughter, born prematurely, must live with the aftermath of cerebral palsy.
In 2019, the two inhabitants of L’Isle-Jourdain in the Gers, near Toulouse, created the association “Hélia Marchera”. Since then, they have stepped up actions to help their daughter and other children in the same case.
Born at five and a half months
A daily struggle. Hélia and her twin sister Lilou, nine, were born prematurely at five and a half months of pregnancy. Stéphanie, their mother, says: “Hélia suffered from a lack of oxygen. The cerebral palsy a engages lesions, and the motor part is affected ”. Lesions whose parents the little girl will be confirmed when she is two years old.
“We have seen that Lilou is developing better than Hélia, even if each child does at their own pace. She was not even on all fours ”. And there, the verdict falls, on their announcement that their daughter will never walk and that she will spend her life in a wheelchair. But “because the diagnosis is not fate”, Stéphanie and Michel Romero, refuse to give up.
“Without being in denial, we decided to fight and try everything. We then meet other parents, who took their children to be re-educated abroad. We watch them come back, with real progress so we said to each other why not us ”.
An operation costing 65,000 euros
Rehabilitation begins, first in Hungary, then in Spain. “Hélia is progressing, but we feel that we have gone at the end of the rehabilitation could bring him, ”explains his mother. And then a solution is offered to them. “We were told abouta surgeon in the United States who could help Helia to make progress ”. Problem, the cost of the operation amounts to 65,000 euros. After reflection, there is no question for parents to miss this opportunity. They give each other one to raise the necessary sum.
The creation of the association
And for that, they to create the Hélia Marchera association in 2019. A successful bet, thanks to the donations collected, Hélia flies to the United States. “For a year, we took action every weekend. It was tiring but humanly rich ”. “If we had to do it again, we would do it again with our eyes closed,” says Stéphanie. “It’s a miracle. The operation eradicated the muscular tensions which should only be called. She can finally move ”, adds Hélia and Lilou’s mother.
A busy daily
Today, operation two and a half years after his, Hélia begins to do his first steps. But despite this progress, the fight is far from over. It’s a busy daily that the family lives. Stephanie, the mother, has just returned to work after taking ten years to take care of her daughters. The dad, he, a former sales executive, had to retrain to have schedules plus facilities.
Hélia, for her part, is studying in a classic class, with a school life assistant (AVS) to support it. But due to the multiple re-education sessions if she is to take part, the little girl must miss school several half-days during the week. If Helia is described by her mother as a fighter and a ray of sunshine, she begins to ask more and more questions.
“Hélia has suffered more than before the handicap for a year. She finds this unfair, especially the fact that for half the vacation she has to go through rehab steps while the other kids are having fun. But she never refuses to work ”.
“France is lagging behind the other European countries”
Occupational therapy or hippotherapy, care so that Hélia can continue to progress until 700 euros per month, not reimbursed. In this everyday struggle, the financial challenge therefore continue to add.
Poland, Hungary, Belgium… For several years, Hélia and her parents have indeed multiplier trips abroad so that the little girl can follow rehabilitation courses. A restrictive situation, due according to Stéphanie Romero the lack of structures and support in France.
“Here, we are really very late. The care offered is palliative, we have increased capacity. The impression that in France it does not interest anyone. Yet in other countries, it is nothing. extraordinary. There are just centers with swimming pool, hippotherapy, and adapted machines. The dream would be to have multidisciplinary centers like that in France “,
“Our handi heroes”, a calendar to help children with disabilities
To continue to disability awareness and power funding care necessary for the development of Hélia, as well as helping children in the same case, the association is participating in a new project:“Our handi heroes”. With eleven other associations worn by mothers of children with disabilities, they decided to create a calendar highlighting these.
Among them, therefore “Hélia Marchera”. “By going abroad, we got to know other families in the same situation as us. We wanted to create a calendar, featuring our children, our little heroes“, Explains Stéphanie Romero.
Available at sale, the funds collected will be donated to the twelve associations.
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