Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Paralympic hopeful speaks out about life-long genetic condition which will not ‘get her down

A Redhill teenager who dreams of competing in the Paralympics has spoken out about her struggles to live with a disability.

Alicia Hennessey with her pony Todd at Urchinwood Manor. Picture: Eleanor YoungAlicia Hennessey, aged 17, is one of only 2,187 people in the UK who has been diagnosed with genetic condition, 22q11 syndrome.

The condition often goes undiagnosed as it has no set symptoms; it manifests itself differently from one person to the next.

However, effects can include fatal heart defects, immune deficiencies and speech and learning difficulties.

22q11 syndrome is caused by a problem with part of a person's DNA, and this small defect is the reason why Alicia has faced so many health problems.

Alicia Hennessey with her pony Todd at Urchinwood Manor. Picture: Eleanor Young

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AHA report by Max Appeal – the only charity which supports families dealing with 22q11 – estimates 128,000 people in the UK are affected but only 2,187 have been diagnosed.

Alicia was diagnosed with the condition after she was born with congenital heart disease and she says the early diagnosis has made a huge difference to her quality of life.

She said: 'I am glad we picked up on the condition early because it meant I knew, if I was ill, the reason behind it. A lot of people can go their whole lives without being diagnosed.'

Claire Hennessey, Alicia's mother, said: 'Alicia has a great team of clinicians supporting her at Bristol Children's Hospital but she has had to contend with many health problems since birth.

Alicia Hennessey with her mum Claire. Picture: Eleanor Young
AHClaire said horse riding has been therapeutic for Alicia, while she aims to compete in dressage at the Paralympics. Alicia is waiting to find out which Paralympic category she will be placed in.

This comes despite Alicia suffering from chronic fatigue, which can mean she is too tired to get out of bed.

She said: 'I have not been able to go to the stables as much as I would like to and it is frustrating for me because I need to build up that relationship with my pony, Todd.

'If I do too much in one day then I get payback days and I will find I cannot do anything, which has meant it has been difficult to keep up with all my studying and everyday life.'

But Alicia has not let her condition hold her back. She has secured a spot at Boom Satsuma Creative – an arts and media college in Bristol – and a place with LegUpForTalent, a sponsorship programme for up-and-coming horse riders.

She added: 'I do not let my disability get me down or get to me; some people do not always understand my problems and how I am feeling.'

To help support Alicia on her journey to the Paralympics, visit www.facebook.com/legupfortalent

Alicia Hennessey. Picture: Eleanor Young