Save my daugh­ter first, says sick mum

PAIR NEED IDEN­TI­CAL OP

Sunday Sun - - News - ByB KatieK ti Di Dick­in­sonki Reporter katie.dick­in­son@trin­i­tymir­ror.com

THIS lov­ing mum has made a heart­break­ing sac­ri­fice to give her daugh­ter a chance at life.

Over the past few years, Ja­nine Gray and her teenage daugh­ter El­lie have been left vir­tu­ally house­bound by the same con­di­tion.

The pair, from East Boldon, live their lives “be­tween the bed and the sofa” due to the de­bil­i­tat­ing symp­toms of Eh­lers Dan­los Syn­drome (EDS) – a rare con­di­tion which causes the joints to dis­lo­cate.

Ja­nine, 48, and El­lie, 18, both need surgery to im­prove mo­bil­ity, al­le­vi­ate the ag­o­nis­ing symp­toms and stop them de­te­ri­o­rat­ing fur­ther.

El­lie’s rare com­pli­ca­tions mean there are cur­rently no neu­ro­sur­geons in the UK who can treat her, but both mother and daugh­ter have been handed a life­line by sur­geons in Barcelona who have agreed to take on their case.

But, in an act of ma­ter­nal love, Ja­nine has de­cided to forego fundrais­ing for her own op­er­a­tion and fo­cus en­tirely on her Me­lanie Hartshorn has had the same life­sav­ing surgery El­lie is hop­ing for daugh­ter’sd h ’ bid f for a h health­ierl hi lif life. Wh When El­lie stopped be­ing able to di­gest food in Jan­uary, Ja­nine and hus­band Neil, 50, knew they had to act fast to stop her suf­fer­ing ir­re­versible dam­age.

The teenager is booked in to have the surgery on Septem­ber 28 in Barcelona but, so far, the fam­ily have raised just over a third of the £94,000 needed for the treat­ment.

It is the same surgery re­cently un­der­gone by Cram­ling­ton’s Me­lanie Hartshorn, 27, who made head­lines when the treat­ment al­lowed her to sit up for the first time in years.

Ja­nine said she “can’t even think about” hav­ing her own op­er­a­tion at the mo­ment.

“This means far more to me, she said.

“It’s one thing do­ing this for your­self but to see my daugh­ter go­ing through this is re­ally aw­ful.

“I want her to have op­por­tu­ni­ties. Her friends have all passed their A Lev­els and it’s heart­break­ing to see her just held back.

“Her qual­ity of life is just hor­ren­dous – she’s con­fined to bed and the sofa.”

El­lie was an ac­tive 12-year-old who loved school, rode horses and swam three times a week when she was di­ag­nosed with a “Chiari mal­for­ma­tion” – where the lower part of the brain ex­tends into the spinal canal.

The news came just months af­ter Ja­nine was di­ag­nosed with the same con­di­tion. The pair were di­ag­nosed with Eh­lers Dan­los Syn­drome (EDS), a rare con­di­tion, which causes the joints to dis­lo­cate.

Ja­nine has been forced to re­tire early from a ca­reer she loved as a doc­tor of med­i­cal statis­tics at Leeds Univer­sity.

And El­lie, whose symp­toms are even worse than her mum’s, lives most of her life ly­ing down to re­lieve the con­stant head pain and dizzi­ness.

A fur­ther de­te­ri­o­ra­tion this year has led to se­vere gas­tro­pare­sis, which means she is un­able to di­gest much food and vom­its daily.

To help El­lie, go to just4chil­dren.org/ chil­dren-helped2017/el­lies-fu­sion JA­NINE GRAY Ja­nine Gray and daugh­ter El­lie, who both have same de­bil­i­tat­ing con­di­tion

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