After losing a child to a rare disease, the woman created a project to help mothers of children with specific needs: ‘Mission does not end in death’. Paran

A woman in the Curitiba region decided to help lighten the routine of other mothers of children, even after her death, seeing the strength that her son had gained for more than eight years while fighting a rare genetic disease known as adrenolyucodystrophy. With specific needs.

Linda Franco, 44, is an administrative assistant and currently a social organizer in Brazil and an adrenolyocodistrophy worker. She has created a project that brings together mothers who have similar problems with their children and, thus, is able to exchange hospital supplies, wheelchairs, special milk, medicines, equipment and experiences.

“My middle son, Gabrielle will be 20 today. I believe with all my heart that wherever she is, she is happy. The mission does not end in death and there is no greater challenge than learning to live without someone. Life, and I am my I am grateful to be able to give them back the love and learning they need to survive with their son. “

The project, known as “Exchange between Special Mothers”, began with a few participants. The group currently has more than 10,000 members, including more than 500 “fixed” people who help and exchange frequently.

adrenoleukodystrophy – Photo: Giuliano Gomes / PR Press

Meeting of mothers of children with specific needs in Curitiba Pinheirinho – Photo: Giuliano Gomez / PR Press

The mother said her son was living normally until he was six years old. In 2009, he was diagnosed with adrenolyucodystrophy. They lived in the hospital for three years, and it was there that Linda, observing the condition of the other mothers, began to think for the group.

“I never imagined what I was doing today. It was in the hospital, in trouble, I learned that my son had rights. That’s where I saw that the family was in a more risky situation than I was, so I had to try to get the bottle to the hospital.” We started taking syringes, sharing food. I created this group because government authorities can’t handle it. They are mothers who help other mothers. And this group is international. We accept donations and donations from outside Brazil. ”

Before getting a name for the project, one of the few moms stops having an action and really falls off the ground, Linda decides to study. He enrolled in a college to study management in a third sector organization.

The mother claimed that Gabriel had lived a happy year, but it had reached a point where the illness began to get worse and he was suffering. On Tuesday, she apologized to the nurse and spoke to her son.

“A mother’s love is selfish, it wants the child around. But there comes a time when this mother’s love ends up talking loudly about taking away the child’s pain and bringing the mother’s pain. That’s what I did. Play some soothing music, put my hand on it and Said: ‘Son, if you have already completed your mission on earth, you can leave and your mother will continue this work.’ I knew he was nearing the end of his life. And I have to do it again. ”

Linda cares for her son Gabriel at the hospital – Photo: Private archive

Even with the pain of being with her son in this situation, she decided to continue her plan to become a professional in order to be able to help, guide and welcome other people in the best possible way.

“And it was on my first day of school that he left. There was a time in my life when I didn’t leave him. During psychological support, they said, ‘Pretty, Gabriel can leave you.’ Simple, it was eight years to live with him, but I realized that the purpose God had prepared for us was not in vain, he was really ‘waiting’ to start our dream of rest.

In addition to the project, Linda also has free discussions to tell her story and raise awareness about adrenolyucodystrophy.

“I go to university to bring information to students, to try to make a difference up front. My son goes blind, stops walking, talking and eating, survives eight years in a plant condition. First in the hospital and then at home ICU. It’s a very It’s a serious illness. We need to share our experiences so that more babies have access, so that mothers can hold their babies in their arms longer. ”

Working with many hands

To lighten the Mother’s Day date for project participants, Linda and dozens of other volunteers held a meeting on Saturday (7), where they all received attention, food, beauty and relaxation services in addition to mobility and bingo.

Grants for mothers of children with special needs – Photo: Giuliano Gomez / PR Press

“I’m happy, I’m crying and I’m smiling. I won’t deny that I miss my son every day, but it’s nice to see those mothers there. I know how hard it is to get a mother out of the house. We are grateful to be the mediator of these donations which help them a lot, such as basic baskets, diapers, syringes, suckers, clothes, etc. It is a work done by many hands “.

Fernanda Santos, 26, has a six-year-old daughter with cerebral palsy, microcephaly, delayed movement and convulsions. For him, the support received by the project is very special.

“Routine is always very demanding. I decided to come to the meeting just to find some time for myself. Every morning at 4:30 am to wake up and give medicine, then there are several methods, I take them to therapy, to the hospital, anyway. One such person. It’s nice to see mothers do something for a sick child. My daughter Rebecca had no one to leave her, because I’m a single mother, but it was nice to come and get a little confused, “she said.

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

Volunteer Anna Paula Cruz, 40, has three children, one of whom has Rasmussen Syndrome, also known as chronic focal encephalitis.

“Arthur was 11 years old, he was normal until he was 1 year and 10 months old. Then, as his convulsions began to show, he was hospitalized in Pecano Princip for a year and a half, he had five surgeries on his head, he had tracheostomy, gastroenteritis “She did not speak, she just communicated with her eyes. The doctor even said that the night she was sick would have an end, but she is alive today.”

According to Anna, helping other mothers, exchanging items and experiences gives her strength.

“She was at home because she was bedridden, she had a respirator, however, she is alive and will spend Mother’s Day with me, she has no greater gift than this. I also have to be with other mothers, give them strength. Those who have lost. , To those who have recently discovered their child’s illness. ”

Anna Paula Cruz, 40, has three children, one of whom suffers from Rasmussen Syndrome – Photo: Giuliano Gomez / PR Press

Linda says other volunteers and friends are also essential to running the project, as they help each other and thus, are able to help mom in even greater need.

“Today I can’t do this alone. The struggle is the same, only the name of the disease changes. And to explain why we pay special attention to mothers, because we know that after a family is diagnosed. One child, many men, children “Father, leave. So all we have to do is come together to fight and it’s worth it.”

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

Meeting of mothers of children with specific needs in Curitiba Pinheirinho – Photo: Giuliano Gomez / PR Press

Meeting of mothers of children with specific needs in Curitiba Pinheirinho – Photo: Giuliano Gomez / PR Press

Preparing to meet the mothers of children with specific needs – Photo: Giuliano Gomez / PR Press

After losing her child to a rare disease, a woman devises a project to help mothers of children with specific needs – Photo: Giuliano Gomez / PR Press

Video: Most viewed on G1PR

Leave a Comment

Your email address will not be published.