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Supporting families affected by DiGeorge Syndrome, VCFS and 22q11.2 deletion


An update about Leah

Leah Sunflowers22q - What Can You Do?

Sarah and Chris Ryan report;

"Leah Ryan is now 17, and amongst other things she has experienced learning difficulties and problems with fine motor skills since she was a baby but was only diagnosed with a mild form of the 22q11.2 deletion syndrome when she had just turned 12. Her parents have ignored any temptation to push her towards achievable goals but have rather preferred to let her find her own way. Here is her latest picture of sunflowers inspired not by Van Gogh, but by the flowers on the front of the International 22q Foundation Calendar for 2014. You will find her as Miss July in that same calendar, proud of what a 22q'er can achieve."


Leahs AwardEveryone is very proud of Leah's Achievement Award for her last year at senior school.

The award was presented by Leah's Headmaster at the end of the school.

Well done Leah for all your efforts.

We all wish you luck in your continued studies and new college course.

More about the Head Teacher's Award

This is what Mr Henshall, Leah's Head Teacher said about her;
School is challenging for many young people affected by 22q DS.

The Head Teacher's Award is given for services to the school. As such, it is a very difficult award to allocate. So many people, including most of the people in this room, have given so much more to this community than simply their time in lessons. We have heard of many sporting and academic successes, many of which were achieved by giving up time to help and volunteer outside the classroom.
The person receiving this year's award is a credit to all of us because she brightens up all of our days.
Those of you who have seen my open evening speeches know that I like my quotes, my doorstepping of our staff, students and governors to glean their views. I asked what they wanted to say about this person, what their thoughts were about her. These are the responses: -
'She's a determined young lady'
'She always sees the best in things'
'I've never seen her miserable, ever!'
'She's a great friend to others. She's brought her friendship group closer together and is really caring'
'She's determined to succeed: Her swimming this year has really come on, as has her school work generally.'
'No matter what she comes up against, she always overcomes it with a smile on her face.'

22q Deletion Syndrome

Before I give you a couple more quotes, let me tell you a little bit more about her:

She was born with 22q11 Deletion Syndrome.

Have you heard of this? The chances are you won't have yet, but you will have in the near future. This is thanks in no small part to our award winner and her family who have given their time and energy campaigning for a recognition of this condition and raising society's awareness of it.

This campaign culminated in a trip to the House of Commons in May along with the charity Max to speak to a group of MPs about the condition. The confidence which she showed in this arena impressed everyone who was there and shows just how much she has developed as a person.

22q11 deletion syndrome basically could have given Leah a lot to complain about in life, and has made learning more difficult for her than most of us. But, far from complaining, she approaches life with a sunny disposition and a positive attitude.
As one of my colleagues said to me last week:
'She is an example to each and every one of us in the way she approaches life.'

The winner of the Head Teachers Award for 2013 is someone I will miss very much next year,


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