Sky Badger is everything that she needed when Max suffered a devastating seizure a decade ago. “The hospital said we shouldn’t worry, he might have had a temperature.” Three days later he had another, then another and another. His parents were terrified. They soon found themselves feeling isolated and clueless.
Until then, everything in Marek’s life had gone pretty much to plan.
She grew up in north London, went to art school, got married and moved to a village outside Cambridge, “a real Miss Marple village”, where she got involved with the local community, running art classes and becoming a school governor. She had two sons, Max and Louis. Max was born with a bilateral cleft lip, but that was dealt with quite easily.
After the seizures started, Max was eventually diagnosed with hard to control epilepsy, autism and developmental delay. The seizures were still coming two or three times a week. He had to go to a special school, he couldn’t ride or swim. “Everything that was his life just stopped,” says Marek.
She was shocked at the lack of help available. Even the school or Max’s doctors couldn’t point her to people and places that might help the family cope.
“Everything you hope for your child - university, a job, marriage — disappears. Instead you ask ‘will he be breathing in the morning?’
“At art school we had a joke: ‘If you don’t succeed, lower your life expectations’ Now that became reality. If Max was breathing it was a good day.”
Support came from Camp Simcha, the Jewish charity for families with seriously ill children. “They turned everything around”. Seeing Max laugh and smile, having a brief respite, and meeting other parents made a huge difference. She recalls one conversation with a very Orthodox mother. “We shared our experiences, I was able to help with her anxieties. A few of us realised that by pooling our knowledge we can all help eachother.” She went home and set up a Facebook page. “It just exploded.”
Ten years on, Marek blinks with surprise at having been awarded an OBE in the New Year’s Honours list. Sky Badger now employs four people — all of them either disabled or parents of a disabled child — and all based from their homes. Volunteer include teenagers, conducting research via their phones, as part of their Duke of Edinburgh awards.
The website, which grew out of the Facebook page, gets visits from all over the world, and has helped more than a million people with advice on everything from respite care to classroom support, adventure days out and avoiding charlatans promising miracle cures. Its lesson plans for schools on disability awareness — focusing on the person and not the disability — have been downloaded 12,000 times.
Marek herself is smiley and upbeat, always putting a positive spin on the challenges that life has thrown up, which include an amicable divorce and balancing the needs of her boys while growing her charity. She acknowledges the “rage” she feels at life’s unfairness, saying she sees that rage turn to depression in many. parents.
She’s clear about why she was able to avoid it herself. It was the example of her grandparents, both refugees from Nazi Germany. “They were my heroes from the day I was born.”
Her grandparents, Irene and Alan White, lived with her and her parents when she was growing up. “Their ethic was helping others,” she says, whether that was running a nursing home, helping found Belsize Square Synagogue, working for animal welfare or taping books and newspapers (including The JC) for blind people. After Alan’s death, Irene continued her work, writing books to raise funds for the synagogue, giving talks about Anne Frank and working with the Association of Jewish Refugees, among other things. “I felt I had to do my best to be like Grandma,” says Marek.
Before Max’s illness she was an artist and art teacher. For a long time she set her work aside because her pictures had become “dark and sad”. But on a recent holiday her new partner gave her a sketchbook, and suggested she spent an hour just drawing. “I loved it.” Now she is sketching again, often drawing her boys.
Louis is 13, a keen rugby player who loves computers. And Max at 16 has come a long way. Marek fought for him to attend a mainstream secondary school, where he passed exams, made friends and found a “lovely” girlfriend. Now 16, he attends a residential college in Shropshire where he can learn about his passion — cooking. “He’s having a wonderful time,” says his mum.
“My dream for Max was for him to pay tax — be part of the world. Someone who has that normal experience of not wanting to get up on a Monday because it’s work,” she adds. “Now it’s a case of working out the next step towards that goal.”
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