Don't miss a story sign up to Weston Mercury's FREE daily newsletter CLICK HERE

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

PUBLISHED: 14:17 07 March 2017

Alicia Hennessey. Picture: Eleanor Young

Alicia Hennessey. Picture: Eleanor Young


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

Alicia 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 mum Claire. Picture: Eleanor Young Alicia Hennessey with her mum Claire. Picture: Eleanor Young

A 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. Picture: Eleanor Young Alicia Hennessey. Picture: Eleanor Young

Claire 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.”

Alicia Hennessey. Picture: Eleanor Young Alicia Hennessey. Picture: Eleanor Young

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


Welcome , please leave your message below.

Optional - JPG files only
Optional - MP3 files only
Optional - 3GP, AVI, MOV, MPG or WMV files

Please log in to leave a comment and share your views with other Weston Mercury visitors.

We enable people to post comments with the aim of encouraging open debate.

Only people who register and sign up to our terms and conditions can post comments. These terms and conditions explain our house rules and legal guidelines.

Comments are not edited by Weston Mercury staff prior to publication but may be automatically filtered.

If you have a complaint about a comment please contact us by clicking on the Report This Comment button next to the comment.

Not a member yet?

Register to create your own unique Weston Mercury account for free.

Signing up is free, quick and easy and offers you the chance to add comments, personalise the site with local information picked just for you, and more.

Sign up now

Other News Stories

Yesterday, 18:00

Rugby clubs from across the area went head-to-head in a fun, team-building event last week.

Read more
Yesterday, 17:00

Sports clubs in Winscombe are hoping to transform the village cricket club into a modern new sports centre to cater for the growing number of thriving teams using the facilities.

Read more
Yesterday, 15:00

A Weston business has signed up as the main sponsor for Weston Hospicecare’s Mendip Challenge.

Read more
Yesterday, 13:55

Children in Hutton were more than happy to spend a Saturday afternoon at school as a treasure hunt-themed event was held.

Read more
Yesterday, 13:00

Creative residents of a North Somerset village showcased their skills with brushes, pastels and pencils this week, competing in an art contest.

Read more
Yesterday, 12:00

Crowds flocked to Cheddar Reservoir this weekend to try out a variety of watersports.

Read more
Yesterday, 10:55

Avon and Somerset Constabulary is looking for people to join its ranks as Police Community Support Officers (PCSOs).

Read more
Yesterday, 09:00

This week iwitness24 was filled with vibrant and colourful photos to wash away the rainy day blues.

Read more
Yesterday, 08:45

Armed officers and military personnel are set to remain on the streets across Avon and Somerset until at least Tuesday, but the country’s terror threat has now been lowered from ‘critical’ to ‘severe’.

Read more
Saturday, May 27, 2017

A man and woman were rescued near Weston-super-Mare’s Tropicana yesterday evening (Friday).

Read more

Most Read News

Read Online

Read the Weston Worle and Somerset Mercury e-edition E-edition

Local Weather



max temp: 18°C

min temp: 15°C

Useful Links

Advertise in the paper
Submit a Story
Subscribe to the paper
Send Your Letters
Order Photos
Family notices
Reader Travel

Family Notices 24

Newsletter Sign Up

Sign up to receive our regular email newsletter

Show Job Lists

Local business directory

Somerset's trusted business finder