Kids take up call to help twins in need

‘So proud’ of young parish­ioners who fundraised

Buckinghamshire Advertiser - - NEWS -

Emerson and Mar­cia Lee from Great Mis­senden were born af­ter just 25 weeks of preg­nancy and were in hos­pi­tal for the first nine months of their lives.

They both have quad­ri­plegic cere­bral palsy and their mus­cle tone changes from day to day, rang­ing from very tight and in­flex­i­ble, to floppy and loose.

This means what they are able to do changes too, al­though they are not able to do any­thing for them­selves.

Al­though Emerson and Mar­cia can­not speak, they com­mu­ni­cate with their eyes. They are both full time wheel­chair users and al­though they have sup­port­ive seat­ing to keep them safe when they are eat­ing, the seats are un­com­fort­able to sit in for any length of time, but there is no statu­tory fund­ing avail­able for al­ter­na­tive seat­ing.

Both chil­dren at­tend a spe­cial res­i­den­tial school where they can sit com­fort­ably, but with­out spe­cial­ist seat­ing while they are at home dur­ing week­ends and school hol­i­days with their par­ents, Jane and Michael and seven-year-old brother Jake, they have no way of re­ally re­lax­ing.

How­ever, as each spe­cial­ist seat costs £2,345, mum Jane con­tacted the Newlife Foun­da­tion for Dis­abled Chil­dren, the UK’s largest char­ity provider of spe­cial­ist equip­ment for chil­dren with dis­abil­i­ties and ter­mi­nal ill­ness.

Afterthechar­ity­launched an ap­peal to raise the funds for the seat­ing, Newlife sup­porter Elly Hance be­gan fundrais­ing with chil­dren from Holy Trin­ity Church in Dean­shanger, rais­ing £2,592.

Ac­tiv­i­ties in­cluded sell­ing sweet treats and her ac­ces­sories and a Brownie sing-a-thon.

One nine-yearold mem­ber of the con­gre­ga­tion, Kerenza Wil­lis, even put her best foot for­ward and com­pleted a spon­sored walk to raise money.

Ms Hance said: “I’ve been over­whelmed by the gen­eros­ity of the com­mu­nity, but most of all the en­thu­si­asm shown by the chil­dren of Holy Trin­ity church to want to make a dif­fer­ence. Th­ese chil­dren are the fu­ture, what an ex­am­ple. We are so proud of them.”

Emerson and Mar­cia’s mum, Jane, said: “It was amaz­ing that peo­ple would help raise the money for the chairs Mar­cia and Emerson needed – and to be able to have them just in time for Christ­mas was great.

“Al­though Emerson and Mar­cia don’t speak, I think they re­ally like them. Now if we watch a film, we can all sit to­gether and re­lax and I know that they are com­fort­able. It gives them more op­tions and it’s nice for them to be able to have an­other seat and have a dif­fer­ent po­si­tion to be in.”

Newlife has pro­vided spe­cial­ist equip­ment for 144 chil­dren in Buck­ing­hamshire, with a to­tal cost of £197,870.

How­ever, the char­ity is cur­rently work­ing with a fur­ther eight fam­i­lies, with com­bined equip­ment needs of £9,249.

If you would like to help a dis­abled child in your area visit www.newlifechar­ity. co.uk/buck­ing­hamshire and click on the do­nate but­ton.

Mar­cia and Emerson Lee in their chairs

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