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Claude Merdjan

Riding For Aaron Kobrin

My fundraising page

TARGET TO RAISE

£3,000.00

TOTAL AMOUNT RAISED

£3,893.00

Donated by 45 members
SPONSOR ME

OF MY TARGET

When you have a child with special needs, there are several questions to be asked. Aimee and I are very competitive, so naturally I posed the controversial one early on: I wonder whose fault this was?

We all know (and enjoy) how babies are made, but there are two ways Special Babies are made.  Either there is abnormal development or damage to the brain (which happens after conception), or there is a genetic mutation at the time of conception.

Aaron’s genetic disorder - Rubinstein-Taybi Syndrome (“RTS”) - falls into the second category, which technically means that one of my or Aimee’s genes didn’t copy into the next generation correctly. It’s a new mutation, so neither of us is a carrier, but for some unknown reason the genes in either the tadpole or the egg were spontaneously transformed upon Aaron's creation.  This infinitesimal mutation in chromosome 16 causes inevitable and severe mental and physical disability. 

When the genetic experts at Great Ormond Street Hospital delivered the diagnosis days after his birth, they explained that it would be possible to determine exactly what happened, but it clearly wasn’t important.

‘It’s not necessary to check, it was obviously your fault’, I consoled my dear wife.

‘Are you kidding? Your face is weird and you can’t even ride a bicycle’, she retorted with love.

I share this story for two reasons: firstly, to create sympathy so that you feel terribly guilty if you don’t donate to the charity I am going to tell you about later, but secondly as a confession – I am 38 years old and I don’t know how to ride a bicycle.   

Aaron fought many battles to survive his first few years and now he is thankfully healthy and happy, but his disabilities are harsh and being his parent or sibling can be a relentless task. With grace, a truly righteous organisation called Kef has supported him since he was a baby and provided our family much needed respite. My words can’t do justice to the kindness of the volunteers, who work with no expectation of reward, and create ripples of endless sunshine in the darkness of so many lives.

Every year they host BIKE4KEF, a one day ride through London to raise awareness and the funds required to keep the lights on. Unfortunately, because of my disability, I can’t actually cycle for 100km to honour my son and these wonderful people, but in 2021 I have decided to appoint a proxy…

Jess - the brilliant lawyer I work with - has drafted a special power of attorney which grants her fiancé and my good friend Claude the legal right to ride on my behalf, but ensure that I still get all the credit and attention. Therefore, I am delighted to announce that Claude I will be taking part in this wonderful event on 6th June and I even think I have a chance of winning the race!

Every rider must commit to raise a certain amount, so Claude is on the hook for £5,000 if you guys don’t cough up. In all seriousness, every penny raised goes to Aaron’s account with Kef, so by giving generously you are ensuring that Aaron can continue to enjoy the infinite benefits of being a part of the Kef family and I can spend my money on scotch instead. (I’m obviously joking, I have promised Aimee we will use the spare cash to buy her shoes to make up for the fact that she can’t do the ride herself because it's an all-male race for religious reasons).

The money raised is not just for our son, but is allocated to the Sunday clubs and various camps and outings Kef organises for Aaron and others like him. Every Sunday we take him to Kef, where the volunteers look after him for 3 hours, giving us much needed reprieve from his demanding care.  In addition to this, Kef offers seasonal camps where the special kids go away for the weekend and enjoy various fun activities and round-the-clock care. It is obviously not cheap to organise the venues, amenities, technical equipment etc.

I am very grateful to Claude for doing this for us and there is truly no cause closer to our hearts. Please help us smash our target in honour of our beautiful boy who turns seven a couple of weeks before the ride, but still can’t say a word and therefore can’t thank you himself.    

Having a kid with special needs is not easy, and as parents we often feel like just falling over. But the greatest lesson in life comes from riding a bicycle:  To keep your balance. you must keep moving.

There’s a great Latin phrase I heard Jeff Bezos loves, Gradatim Ferociter, which means step by step, ferociously. It’s become  a personal motto for the journey Aaron has taken us on and the perfect message for me to leave you with. You can't skip steps in life, you have to put one foot in front of the other because things take time. There are no shortcuts, but take every step with passion and ferocity.

Get behind Aaron and Claude when he takes the first step on that pedal in June and give liberally. 

I hope I have moved you enough to inspire you to contribute, but if you can’t afford it, please at least share the link to help us spread the love.

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A little more details of Kef below 

 

KEF is a Jewish, London-based, non-profit, voluntary organisation dedicated to offering friendship and fun to children, teens and young adults with special needs and disabilities throughout the UK. KEF provides out-of-school activities, recreational events, residential trips and sleep-away camps.

FUNDRAISING HISTORY

This rider hasnt ridden before
FUNDRAISING 2021
Amount Date Sponsor Comment
£31.25 20/07/2021 Daryl Phillips Well done Claude

From Daryl Laura and Joely
£36.00 16/06/2021 Anonymous The real heroes!
£25.00 07/06/2021 Lauren Azulay
£22.50 06/06/2021 Anonymous
£18.00 06/06/2021 Michael Millet Like is like riding a bicycle- to keep your balance you must keep moving.
Well done Aimee !!!!!
Youre a SuperGirl !!!!
£22.50 06/06/2021 Lisa Scott For the gorgeous Kobrin family.
£62.50 06/06/2021 Jodi Rubin For Aaron and Aimee x
Well done
£50.00 06/06/2021 Charles Gottschalk We love you Aj
FROM Caits, Charles, Issy, Ollie and Maddie
£18.00 06/06/2021 Anonymous In honour of you Claudia and your dedication to such an important cause and in honour of the KOBREN’S loveable and inspiring people
£62.50 06/06/2021 Alessandra Corin Great cause. Love Ally and Greg xxx
£18.00 06/06/2021 Rachel Gerschlowitz Well done Claude and Kobrin family love the gershies x
£22.50 06/06/2021 Nicole Fels Good luck!
£45.00 06/06/2021 Joanna Rosenblatt
£125.00 05/06/2021 Debbie Merdjan Great cause - good luck Claude and have a good race !
£50.00 04/06/2021 Mylene Margossian
£54.00 04/06/2021 Anonymous Wonderful cause, good luck for the ride! Laura
£383.75 03/06/2021 Martin Chesler Wonderful cause! Claude - you’re off the hook :-)
£50.00 01/06/2021 Anonymous
£250.00 28/05/2021 Sandy Wilheim For Aaron xx
£25.00 28/05/2021 Anonymous
£62.50 27/05/2021 Anonymous
£100.00 26/05/2021 Nicholas Angeliniadis Best of luck for the ride! Nico & Dee
£50.00 25/05/2021 Claudia Goncalves Love this! Goodluck!
£50.00 25/05/2021 Anonymous
£360.00 24/05/2021 Claudia Salem Best of luck,
Lots of love,
Claudia & Robby
£18.00 20/05/2021 Rochelle Visel Dedicated to you Aaron. Lots of love, Shimmy and family x
£62.50 15/05/2021 Sharon Taberer Best of luck - you are a star! The Taberers
£62.50 13/05/2021 Richard Barrett Good luck with the ride!
£25.00 13/05/2021 Beverley Seidle good luck, great cause
£50.00 12/05/2021 Anonymous
£50.00 12/05/2021 Dimitar Yordanov Good luck!
£312.50 12/05/2021 Brendon Silver
£50.00 12/05/2021 Jonathan Matthews you better win!
£250.00 12/05/2021 Adam Seidle Break a leg Claudey :) (not literally of course)
£45.00 12/05/2021 Kristian Birch
£45.00 12/05/2021 Michelle Lasky Well done. Such a great cause x
£62.50 12/05/2021 ian Stevens
£125.00 12/05/2021 David Schapkaitz Bring back castle corner !
£50.00 12/05/2021 Jashil Makan
£62.50 06/05/2021 Mark Green What a fantastic cause and thanks so much to Aimee for giving us the chance to help xxx hugs Mark & Jed
£62.50 05/05/2021 Robert Winton Good luck on the ride.
A very worthwhile & deserving charity.
£36.00 04/05/2021 Gali Katz
£180.00 04/05/2021 Selwyn Stein
£225.00 04/05/2021 Anonymous
£125.00 04/05/2021 Lee Josephs Great work Claude for a fantastic charity!!