Fam­ily calls for help to spread Christ­mas cheer

Funds are low as plans are made to wel­come Rett Syn­drome suf­fer­ers

Buckinghamshire Advertiser - - NEWS -

Cassie Twohigg, of Nar­cot Road, Chal­font St Giles, suf­fers­fromRet­tSyn­drome, and for the past three years her par­ents, Mick and Tra­cie, have or­gan­ised a get to­gether for other suf­fer­ers and their fam­i­lies from all over the UK. Last year the party at­tracted 15 chil­dren and their fam­i­lies, and the Twohiggs ex­pect to host 20 to 25 this year.

But due to a de­te­ri­o­ra­tion in Cassie’s con­di­tion, Mrs Twohigg has had to leave her job and re­turn to be­ing her daugh­ter’s carer.

Cassie’s sis­ter Shan­non, 14, also cares for her and won this year’s Pride of Bucks Young Carer award.

The Christ­mas party, which is held at Chal­font St Giles Youth Club, is paid for by the Twohiggs.

Each year the chil­dren – and their sib­lings – re­ceive a spe­cial gift. A lo­cal DJ also gives time for free and Fa­ther Christ­mas, who hands out the presents, vol­un­teers his time.

Mrs Twohigg said it is not an of­fi­cial char­ity, but rather a chance for the chil­dren to play and have a good time with­out the worry of be­ing stared at.

She said: “Why do we have it? It’s a chance for fam­i­lies to get to­gether and have a laugh.

“They are safe and no­body is star­ing at them. No­body else has to worry.

“We try and get some­thing spe­cial for chil­dren with Rett syn­drome.”

The syn­drome is a rare con­di­tion that af­fects brain de­vel­op­ment and can cause se­vere phys­i­cal and men­tal dis­abil­ity, be­gin­ning in early child­hood.

The con­di­tion mainly af­fects fe­males, with only 35 boys in the whole of the UK suf­fer­ing from it, ac­cord­ing to Mrs Twohigg.

She added: “We’re quite ex­cited this year. We have one boy com­ing.”

The Voice of South Bucks Tom Cary has agreed to sing at the party, and there will also be a ma­gi­cian to en­ter­tain the fam­i­lies.

Mrs Twohigg said: “It’s not a char­ity, it’s just some­thing we do. I want it to get big­ger, I love it.

“It’s the most ex­haust­ing day of my life but it’s the most amaz­ing. We try and get a pic­ture all to­gether to say, ‘we did it, we got 15 girls to­gether in the same room.’”

She said the party is an op­por­tu­nity for ev­ery­one to for­get about the out­side world and en­joy them­selves.

Mrs Twohigg added: “We do what­ever we can to just make this life as easy as pos­si­ble. For just a few hours they re­lax and en­joy, and re­mem­ber it’s ac­tu­ally Christ­mas.

“Peo­ple say, ‘how do you cope?’, and we say we cope be­cause we have to. At the end of the day they are our chil­dren.

“It’s just get­ting the mes­sage out there that th­ese chil­dren do ex­ist.”

The Christ­mas party will be held on Sun­day De­cem­ber 6, from 1pm un­til 4pm, at the club in Nar­cot Lane.

For more in­for­ma­tion about the day, visit http:// go­fund.me/7y3m89tw.

Mike, Cassie, Shan­non and Tra­cie.

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