After losing a baby to a rare disease, a woman creates a plan to help mothers of children with specific needs: ‘Mission does not end in death’ | Parana

Inspired by the power of her son, who has struggled for more than eight years against a rare genetic disease called adrenoleukodystrophy, the Curitiba region woman decided to help lighten the diaries of other children’s mothers even after his death. With specific requirements.

Linda Franco, 44, is an administrative assistant and is currently a social mobilizer and adrenoalcodystrophy activist in Brazil. They created a plan to unite mothers with similar difficulties with their children and, thus, be able to exchange hospital supplies, wheelchairs, specialty milk, medicines, equipment and experiences.

“My middle son Gabriel turns 20 today. I believe with all my heart that he is happy wherever he is. The mission does not end in death and there is no greater challenge than learning to live with someone. Life, and living with my son, I am grateful to give back to those in need the love and learning I have accumulated.”

A project called “exchange-exchange between special mothers” began with some participants. The group currently has more than 10,000 members, more than 500 “stable”, who help and exchange frequently.

adrenoleukodystrophy – Photo: Giuliano Gomez / PR Press

Meeting of Mothers of Children with Specific Needs, in Pinherinho, Curiಬಾba – Photo: Giuliano Gomes / PR Press

The mother says her son usually lived there until he was six years old. In 2009, she was diagnosed with adrenoleukodystrophy. She lived in the hospital for three years, and there Linda, observing the situation of the other mothers, began the idea of ​​the group.

“I never imagined what I would do today. I learned that my son has his rights in the hospital, amidst the hardships. I have seen families where there are worse cases than me. So I started taking bottles to the hospital, taking syringes and sharing food. I created a group because they couldn’t handle it, they are mothers who help other mothers, and this group is international, and we accept donations and donations from outside Brazil.

Before the project got its name, it ceased to be just an act between some mothers and really got off the ground, Linda decided to study. She attended college to study the management of third sector institutions.

The mother claims that Gabriel lived happy years, but the illness began to gain more weight and he was suffering. On Tuesday, she apologized to the nurse and talked to her son.

“Mother’s love is selfish, it wants to be a child. But the time comes when this mother’s love speaks loudly in the sense of taking away the child’s grief and bringing grief to the mother. That’s what I did. “I knew that if you accomplished your mission, you could leave and your mother would continue the work. ‘

Linda takes care of her son Gabriel in hospital – Photo: Personal archive

Despite the pain of being with her son in this situation, she decided to pursue a plan to become a professional to help, mentor and welcome other people.

“And he left on the first day of my school. There was a time in my life when I didn’t leave him. During mental support, he said, ‘Beautiful, Gabriel can choose to leave you.’ I lived with him for eight years, but I understand that that was the purpose God prepared for us.

In addition to the project, Linda is giving away free talks to tell her story and raise awareness about adrenoleukodystrophy.

My son became blind, walked, talked and stopped eating, lived for eight years in a vegetative state. , So that mothers can hold their children in their arms for longer. ”

Work done by many hands

To lighten the Mother’s Day date for those involved in the project, Linda and dozens of other volunteers held a meeting on Saturday (7) where they received attention, food, beauty and relaxation services along with dynamics and bingo.

Donations to mothers of children with specific needs – Photo: Giuliano Gomes / PR Press

“I’m happy, I cry and I laugh. I don’t deny that I miss my son every day, but it’s nice to see those mothers who have moments like that. I know how hard it can be to get a mother out of the house.”

26-year-old Fernanda Santos has a six-year-old daughter who has cerebral palsy, microcephaly, delayed movement and cramps. For her, the support she received from the project was very special.

“The routine is always very demanding. I decided to come here at the meeting to take some time for myself. Every day I wake up at 4:30 am for medication, and then there are several procedures. I had no one to leave daughter Rebecca because I was a single mom, but it was wonderful to come and be a little distracted, ”she said.

Fernanda Santos, 26, and her daughter Rebecca – Photo: Giuliano Gomez / PR Press

Volunteer Ana Paula Cruz, 40, has three children and one of them has Rasmussen syndrome, also known as chronic focal encephalitis.

“Arthur was 11, he was normal for 1 year and 10 months. Then, he started to have symptoms of seizures. He was in the Pequeno Principal Hospital for a year and a half. He had five head surgeries. He had to have a tracheostomy, gastro. .The doctor said it was one of the last nights he was sick, but he is alive today ”.

According to Ana, helping other mothers, exchanging objects and experiences empowers her.

“He’s at home because he’s holding a bed. He’s breathing. However, he’s alive and spends Mother’s Day with me. He doesn’t have a great gift. I have to be with other mothers, give him strength. He’s lost, to those who recently discovered their child’s illness.”

Ana Paula Cruz, 40, has three children and one of them has Rasmussen syndrome – Photo: Giuliano Gomez / PR Press

Linda says it is also essential for other volunteers and friends to run the project, as they help each other and, in this way, be able to help more mothers in need.

“I will not be able to do this alone today. The fight will be the same, the name of the disease will change. And to explain why we pay special attention to mothers, we know after the family receives the diagnosis. One child, many men, father of children, leave. And it’s worth it. “

Linda says Vanessa and Gisele, other volunteers and friends, are essential to running the project – Photo: Giuliano Gomez / PR Press

Meeting of Mothers of Children with Specific Needs, in Pinherinho, Curiಬಾba – Photo: Giuliano Gomes / PR Press

Meeting of Mothers of Children with Specific Needs, in Pinherinho, Curiಬಾba – Photo: Giuliano Gomes / PR Press

Preparing for a Meeting with Mothers of Children with Special Needs – Photo: Giuliano Gomez / PR Press

After losing her baby to a rare disease, a woman creates a plan to help mothers of children with specific needs – Photo: Giuliano Gomes / PR Press

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