"Donating to get answers about autism"

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What causes autism, and why might one child be affected while his or her siblings are not? These are questions that will always plague Stephanie Bobeck Arnhög and her husband Gustav.

When Stephanie´s eight-year old son Hugo was diagnosed with autism at the age of three, she had many questions, but information was scarce. To get the answers they sought, the family decided to donate money to autism research at Karolinska Institutet’s Centre for Neurodevelopmental Disorders (KIND), a centre of excellence for research, development and education on neuropsychiatric disabilities. 

It all began in 2014 when Stephanie and Gustav were planning their wedding. As they were preparing their invitations, they decided to ask their friends to donate money to a charitable cause instead of spending it on wedding gifts. Their only requirements were to have control over and be able to show their friends how the money was being spent. They considered different ideas until Gustav hit upon the obvious answer: autism research. Gustav called Karolinska Institutet and was referred to KIND and Professor Sven Bölte, who told them about the centre’s research. “All it took was one conversation for us to realise that we’d made the right choice,” says Stephanie Bobeck Arnhög. “The researchers here are trying to solve some of the mysteries of autism. We were very keen to support their work, and they were grateful that we’d chosen KIND for our donation.

So before the wedding, we opened an account in Hugo’s name, which we called Hugo’s Research Fund. The reactions from our guests were more than positive. After all, they know our little boy and are very fond of him. He’s also been an eye-opener for them. I think many of our friends used to have preconceived ideas of what autism was, and thanks to Hugo, they’ve realised that diagnoses are very individual. Hugo’s a very secure and happy boy, and I think their relationship with him made them even more generous.” Stephanie says that they raised SEK 147,954 for the fund, which they wanted to match with their own money.

 

So to date, Hugo’s research fund has contributed almost SEK 300,000 to KIND. “We want to continue donating to the fund,” says Stephanie. What the family, which has grown by another two children, now hopes is that the research being done will answer the question of how and why autism develops. “Hugo was affected but not his little brother Charlie, who’s six. Why is that? Their baby sister Scott is only five months old and too young to be diagnosed.

”Stephanie stresses that while finding the causes of autism is important, so is finding medical solutions and treatments. “Most of all, we hope that it will one day be possible to prevent autism so that no one is affected by it.” 

Photo: Erik Cronberg

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