Ready to rock for Holly Gigs help girl with rare con­di­tion

Gloucestershire Echo - - NEWS - By ROBIN JENK­INS

IMAG­INE not be­ing able to say any­thing and hav­ing vir­tu­ally no con­trol over any of your move­ments. That is the re­al­ity of life for 10-yearold Chel­tenham girl Holly Boyes be­cause she suf­fers from a con­di­tion called Rett Syn­drome.

It is a rare ge­netic dis­or­der that af­fects brain de­vel­op­ment and re­sults in se­vere phys­i­cal dis­abil­ity.

Holly seemed like a nor­mal child at first but things quickly went down­hill for her and she has only ever said a few words in her life - and that was many years ago.

Now she can only com­mu­ni­cate through an eye gaze ma­chine, a com­puter that picks up on what she is look­ing at and speaks words for her.

The tech­nol­ogy is rel­a­tively new and Holly’s par­ents, Emma and Adrian, say the process of mak­ing it work well for their daugh­ter is very much in the early stages.

They still use sim­ple ‘yes’ and ‘no’ cards to work out what she does and does not want.

Emma does not work be­cause she has to care for Holly all the time, apart from the six hours a day she spends each week day as a pupil at Bet­tridge School in Chel­tenham.

She needs con­stant care, not even be­ing able to eat or drink her­self. That has to be given to her through a tube that goes into her stom­ach.

Life can be in­cred­i­bly tough for Emma and Adrian, not least be­cause they see how frus­trated Holly can be­come be­cause of her sit­u­a­tion. She was di­ag­nosed with Rett Syn­drome when she was two-and-a-half.

But Emma and Adrian are de­ter­mined to re­main as pos­i­tive as they can and do the best for their daugh­ter. They live with her and their two-year-old son Char­lie in a spe­cially-adapted house on the edge of Pittville.

Emma said: “It’s re­ally hard, re­ally frus­trat­ing and emo­tion­ally drain­ing.

“But I love her be­cause she’s Holly. There are ups and downs. There are mo­ments where she’s happy and con­tent but then some­thing comes up.”

One of the phys­i­cal prob­lems af­fect­ing Holly is epilepsy. It leads to seizures that can stop her breath­ing for min­utes at a time.

An­other is­sue has been chest in­fec­tions, with Holly need­ing hos­pi­tal treat­ment five times last year be­cause of them.

Emma said she had to dress her daugh­ter, wash her and per­form the small­est of ac­tions for her - such as chang­ing the chan­nels on the TV.

Rett Syn­drome is like Locked-in Syn­drome but whereas peo­ple with the lat­ter suf­fer from paral­y­sis, those with the for­mer do not. Their move­ments are re­stricted, with Holly’s be­ing par­tic­u­larly se­verely limited, but not as a re­sult of be­ing paral­ysed.

Adrian, who works for Coca-cola, said Holly’s ill­ness made life tougher than peo­ple could imag­ine but he was fo­cussed on help­ing her and other Rett Syn­drome suf­fer­ers.

Which is why he or­gan­ises an an­nual mu­sic fes­ti­val ev­ery year in Chel­tenham, with the money help­ing to cover the cost of his daugh­ter’s care and go to­wards Rett Syn­drome char­i­ties.

This year’s event will see Neville Sta­ple, for­mer front man with The Spe­cials and Fun Boy Three, per­form with his band at the Frog and Fid­dle on March 2.

The gig has sold out but peo­ple can at­tend free acous­tic ses­sions with var­i­ous bands at the Brew­house & Kitchen in the Brew­ery Quar­ter, be­tween noon and 6pm.

Holly Boyes, from Chel­tenham, who has Rett Syn­drome and can only com­mu­ni­cate with her eyes

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