DOORNEThe Deurnese shelter Merlijn vzw, for children who need extra care, is urgently looking for 50,000 euros for a roof on the playground. Daughter Pippa of Family actress Marianne ‘Iris Massant’ Devriese has been with Merlijn for four years. Devriese is now godmother of the non-profit association and will support the benefit action later this month: “Is it a shame that something like this cannot be done quickly through subsidies?”
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For 42 years, Merlijn vzw has been committed to children up to the age of six with care needs arising from multiple disabilities and/or autism spectrum disorder. From the school replacement institution on Schotensesteenweg in Deurne, up to fifty children are cared for daily in different classes. Work is carried out on a pedagogical, therapeutic and medical level. The parents are also supported by Merlijn’s team. They receive both emotional guidance and guidance in the tangle of paperwork and bureaucracy in the special care sector.
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The center is currently in urgent need of a new roof on the playground. The Flemish Ministry of Welfare could possibly intervene, but a subsidy application would take far too much time if it is accepted at all. Merlin can’t wait for that. Children with autism prefer to play in the open air, where there are fewer stimuli than in a closed indoor space. When it rains – it sometimes happens in our country – a center like Merlin has everything it takes to have a covered playground.
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Merlin Moves
That is why the benefit action Merlijn Beweegt will be organized in the center on Sunday 19 September. The program includes cycling tours of 25 and 75 kilometers and a walking tour of five kilometers in the green surroundings on the border between Deurne and Schoten. Participants pay an amount per kilometer traveled and can be sponsored by people who do not participate. Those who are less sporty but still want to support, can come and drink a pint or eat something delicious.
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(read more below the photo)
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Pippa
Merlijn Beweegt is supported by, among others, sports journalists Catherine ‘De Slimste Mens’ Van Eylen and Dirk Gerlo. Godmother of the non-profit organization, actress Marianne Devries, best known as ‘Iris’ in Familie, also jumps on her bike for charity that Sunday. Her daughter Pippa (6) had her last day with Merlin last Monday. Today she started for the first time at Sint-Rafaël in Sint-Job-in-‘t-Goor (Brecht), for special education.
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“It’s a big step for her and for us,” says mom Marianne. “But so far everything has gone well. She was really looking forward to going to the big ‘Bear Class’ on Wednesday morning”, she smiles. “She has always liked to sit on Merlin. The realization that that is no longer possible is not yet with her. We hope that shock won’t be too bad when she fully realizes it.”
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GRIN2B
Pippa has the genetic disorder GRIN2B syndrome. A brain defect so rare – about three hundred known cases worldwide – that no more accessible name has been invented for it. Little is known about the disease and it cannot be cured with gene therapy, as was the case with the well-known Baby Pia. The defect is in the brain. Pippa has a motor deficit, but she is also behind on a cognitive, social and motor level. The condition is not hereditary.
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“It’s just bad luck,” Marianne continues. “That’s why it’s good that institutions like Merlin exist. The guidance there is almost one on one, two to three supervisors for classes of seven. Pippa has benefited greatly from that. It was a safe haven for her. When she started there as a two-year-old baby, she didn’t use her legs yet, she couldn’t stand up and moved very crazy, she barely communicated. After two months of Merlin she was already walking on our hand and another two months later she was completely independent. After her last day Merlin, last Monday, she jumps and dances. She’s still lagging behind her peers, but she’s made huge strides with Merlin.”
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(read more below the photo)
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Drowning in papers
“But as parents we have also benefited enormously from Merlin. After the diagnosis, which we only received after two and a half years, you suddenly end up in a world that you do not know. The world of the disabled. You are drowning in paperwork, applications, allowances and whatnot. At Merlijn they took our hand and literally helped us fill in and send papers. And they also offer you a handkerchief if you are crying, because it is very hard to leave your child in such a facility.”
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Before Marianne and her husband Steve – also known from television – discovered Merlin, Pippa went to a nursery. “Everything from therapies such as physio and logo had to be done after crèche hours. We are extremely grateful that all these things can happen at Merlin during the shelter hours. That gives us parents and Pippa’s two older sisters – who, just to be clear, cherish her – more breathing room.”
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Right moment
The last year Marianne became godmother of the non-profit association. “I immediately said yes when they asked me that question. It also came at the right time. I don’t think I would be emotionally ready in the early days, to speak up about it so freely and put myself in the forefront.”
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“As a godmother, I can literally and figuratively contribute. But in the first place it is of course incomprehensible that a non-profit organization such as Merlijn has to rely on private donations. For infrastructure, hardly any money is released from the Ministry of Welfare and for small or medium-sized interventions, which are urgent, the procedures are far too cumbersome. Two years ago, when one heat wave followed another, there was no air-conditioning in the entire building, a hell for both carer and child. We also had to solve that through private funds. That shouldn’t be right? It is clear that there is still a lot that is lacking in the health care system in our country.”
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More info via merlijnbeweegt.be for those who want to participate or donate. More information about the non-profit organization via merlijnvzw.be.
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