‘Enjoy the ride!’ The extraordinary story of one Norwood Challenger

17 October 2019

Every year, more than 250 people take part in a Challenge to raise vital funds for Norwood. All have different reasons for doing so and, sometimes, those reasons for raising money for charity in this way really do begin at home…

In the early 1990s, Norwood did something that had never been done before: it organised the world’s first international cycling challenge to raise money for charity. Jewish people and a gruelling physical test? Eyebrows were raised. So, too, was a significant amount of money.

Since then, thousands of people from all walks of life have taken part in a Norwood Challenge. Some come back year after year. Some undertake a particular event to visit a particular country. Increasingly, the people Norwood supports are encouraged to join in. Come one, come all: Norwood Challenges are a popular, inclusive and enjoyable way to raise money and awareness for a good cause.

But while there are many different ways to take part – running, trekking, walking, cycling – there are an even greater number of reasons why people choose to do so. And some of these are deeply personal.

Take Aimee Kobrin, who is cycling the length of Israel for Norwood later this month [October]. This will be Aimee’s first Norwood Challenge, and she is in no doubt at all why she is doing it and who she is doing it for: “I am doing this in AJ’s honour,” she says.

AJ is what the Kobrin family call their youngest child, Aaron Joseph. Aaron was born in the early hours on Saturday 17 May 2014 and it became clear pretty soon after that things were not as they should have been. To understand that moment a little better, Aimee’s husband (and Aaron’s dad), Gareth, wrote the following a few days later…

“Around 6:30pm on Saturday, Aimee called to tell me to get my ass urgently back to the hospital. I thought nothing of it since she is prone to panic, but when I was brought into a cold room where the baby was being prodded by three people, I knew something wasn’t kosher.

“In a nutshell, they had called in the top paediatric specialist in north London to examine our baby. She was clinical and to the point and she listed 14 observations which weren’t “quite right” about him. Abnormalities. Defects. Some were totally innocuous and some downright freaky.

“When babies have so many seemingly unrelated issues, it usually points towards an underlying syndrome; some kind of genetic or chromosomal anomaly that explains all the deviations from normality.

“I have received bad news before in my life, but this was by far the most terrifying and traumatic thing I had ever heard. I completely broke down. Wept like a little girl in Aimee’s arms.”  

Eventually, the family were given a diagnosis: Rubinstein-Taybi Syndrome. Aaron’s dad explains: “A syndrome (in the context of genetics) is just the name given to a specific mutation that has a clear and predictable set of results. The most widely known syndrome is Down’s. Rubinstein-Taybi Syndrome is similar but significantly rarer and has slightly more severe implications. It turns out, we got ourselves a Limited Edition child.”

More than five years later, Aimee can reflect on all of this with a startling clarity. “Aaron is now almost six and he is a fascinating, magnificent miracle. He surprises all of us and it really is a privilege to guide him, protect him and love him. Make no mistake, the journey has been a gruelling one and the future is uncertain, but nothing worth doing is easy.”

Perhaps because of that “nothing worth doing is easy” ethos, Aimee is now preparing to set off on an adventure of her own: a six-day, 594km Norwood Challenge in Israel. 

“I think Aaron’s message to us all is that we should embrace the hard roads we face in life and just get on our bikes and enjoy the ride,” she says.

“Life with a special baby is all about survival. Him physically and me mentally. It’s a frenetic ride, up and down, with people coming in and out. It’s remembering what appointment is when and rushing off to see one therapist or another. It’s a whirlwind, mind-blowing, rollercoaster routine. But it’s actually this discipline that keeps you going.”

It’s not just “keeping going” that has led Aimee to undertake this challenge. “About a year ago I had just taught my two daughters how to ride bicycles and I got a bit sad when it dawned on me that Aaron will never learn how. But instead of focusing on that, I decided to put him on a front bike seat and ride with him! You can’t believe how he laughed as he experienced that sensational feeling of freedom and movement. But I hadn’t thought about the dismount, and when I stopped to take a break, Aaron and I fell off, landing quite badly on the gravel.

“What I didn’t know at the time was that Aaron had snapped his fragile collarbone, though that didn’t stop him smiling and giggling through his first and last outing on a bicycle.

“Imagine we could all look past the pain and just enjoy the ride?”

“I love my life and I love my story. My son has captured the heart of everyone lucky enough to have met him and, when you watch him, it is obvious that he really only knows joy. But we honestly don’t know how long this will last.

“Knowing that there will be an organisation such as Norwood around when he is older gives me the answer to one of the questions I had when he was born: will there be a place for Aaron in the world? Thanks to Norwood, there will be, but AJ’s special place in the world will not happen by magic – Norwood needs all the funding people can raise to ensure that my boy and hundreds like him can be nurtured and have a home.”

In fact, Norwood relies on donations for about one-third of its operating budget. In short, many of the services it provides would just not be possible without the effort of extraordinary people like Aimee and her family.

“When Aaron was born,” Aimee says, “I was very close to putting him in a rucksack and hunting down some ancient mystic in Israel to tell me what it all means. I am now riding that same bicycle Aaron fell off from the top of the Holy Land to the bottom to raise money for Norwood, spreading his message that you don’t have to worry about the meaning of the journey – the meaning is the journey.”

To support Aimee’s Norwood Challenge and to read more of her extraordinary story, go here.

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