LIV­ING W

Huddersfield Daily Examiner - - FRONT PAGE -

Her dis­tress came both from the fact that the news was un­ex­pected, and what she un­der­stood about the con­di­tion was largely based on neg­a­tive stereo­types from her own child­hood.

She ex­plains: “When I was grow­ing up peo­ple with Down’s weren’t al­lowed to go to school; there was no point in ed­u­cat­ing them. There was this feel­ing they were go­ing to have no life and they couldn’t learn.”

But the for­mer sec­ondary school teacher from Slaith­waite, and co­founder of the Colne Val­ley ed­u­ca­tional or­gan­i­sa­tion Globe Arts, has dis­cov­ered that noth­ing could be fur­ther from the truth.

To­day, her lively four-year-old son is grad­u­ally work­ing his way through the mile­stones of de­vel­op­ment. He at­tends main­stream school in Linth­waite and even has a fledg­ling mod­el­ling ca­reer.

As Re­becca says: “He can do ev­ery­thing other chil­dren can do, it just takes him an aw­ful lot longer to get there. He was 16 months old be­fore he could sit un­aided and three when he walked. Talk­ing will come, but at the mo­ment he can’t ex­press him­self in words, although he can un­der­stand things re­ally well. And he’s still in nap­pies.

“But he has a zest for life, with­out a doubt.”

This zest and en­joy­ment for liv­ing proved to be a real sell­ing point when Re­becca ap­proached a Sh­effield-based mod­el­ling agency, Zebedee Man­age­ment, which signs up peo­ple with dis­abil­i­ties, and took Gabriel for a test pho­to­shoot.

“He just loved ev­ery mo­ment,” she said, “and the pic­tures were amaz­ing. He’s quite a show-off and loves to per­form.”

Put­ting Gabriel in the lime­light is im­por­tant, she be­lieves, in or­der to show the many pos­i­tives of life with Down’s Syn­drome (also known as Tri­somy 21). So far he’s se­cured work on High Street brand River Is­land’s #la­bel­sare­for­clothes cam­paign and has ap­peared in a pro­mo­tional video for an or­tho­dox Jewish school in Lon­don, which was set up by a par­ent with a Down’s child and pro­motes in­clu­sive learn­ing.

Re­becca feels that the fu­ture of Down’s peo­ple is cur­rently on a knife edge. The NHS is about to in­tro­duce a new non­in­va­sive blood test for ante-natal di­ag­no­sis of the chro­mo­so­mal con­di­tion.

At the mo­ment nine out of 10 preg­nan­cies with an ante-natal di­ag­no­sis of Down’s are ter­mi­nated, but around one-third of UK women opt out of in­va­sive screen­ing, such ■■First iden­ti­fied by Dr John Lang­don Down in 1866, the syn­drome is caused by an ad­di­tional copy of chro­mo­some 21 - hence its al­ter­na­tive name Tri­somy 21. ■■Hu­mans have 23 chro­mo­some pairs, one of each pair in­her­ited from each par­ent. ■■The chro­mo­some ab­nor­mal­ity caus­ing Down’s was iden­ti­fied in the late 1950s. ■■Peo­ple with Down’s have cer­tain com­mon char­ac­ter­is­tics, such as slant­ing eyes and a flat­tened head, and ex­pe­ri­ence de­vel­op­men­tal de­lays and learn­ing dif­fi­cul­ties. They may also have heart de­fects and thyroid prob­lems. Av­er­age life ex­pectancy is be­tween 50 and 60. ■■The sta­tis­ti­cal risk of hav­ing a baby with Down’s is 1 in 1,500 at the age of 20 and 1 in 100 at the age of 40. as am­nio­cen­te­sis, al­to­gether. The Non-In­va­sive Pre­na­tal Test­ing blood test, of­fered to all ex­pec­tant moth­ers early in preg­nancy, could lead to many more abor­tions – a mat­ter the Church of Eng­land Synod re­cently dis­cussed with some con­cern.

As Re­becca says: “At the an­te­na­tal stage there is a fo­cus on the med­i­cal is­sues that come with Tri­somy 21, not what life will be like. Gabriel has a num­ber of med­i­cal is­sues – he has weak­ness from low mus­cle tone, hy­per­mo­bil­ity (over­flex­i­ble joints) and glue ear, af­fect­ing his hear­ing – but they’re just not that sig­nif­i­cant.

“If ev­ery­one aborts then you are ef­fec­tively wip­ing out a whole group of so­ci­ety who have been around for

If ev­ery­one aborts then you are ef­fec­tively wip­ing out a whole group of so­ci­ety who have been around for ever.

ever. There have al­ways been peo­ple like Gabriel.”

Her voice is not alone by any means. Two years ago tele­vi­sion ac­tress Sally Phillips, whose son Olly has Down’s, made a pro­gramme for BBC 2 en­ti­tled A World With­out Down’s Syn­drome. In it she raises the point that since the in­tro­duc­tion of ac­cu­rate, non-in­va­sive test­ing in Ice­land no new Down’s chil­dren are be­ing born in the coun­try. She says she wouldn’t want to live in a world with­out peo­ple like Olly.

Re­becca, who was 42 when Gabriel was born, opted for a non­in­va­sive ul­tra­sound nuchal fold scan while preg­nant. The scan mea­sures the amount of fluid at the back of a baby’s neck and can in­di­cate a risk of Down’s. She was told that her preg­nancy was low risk, but says that even if it had flagged up a prob­lem she wouldn’t have done any­thing about it.

She added: “To be quite frank, at my age, even had he come back as high risk of a di­ag­no­sis, he would still be here.”

Gabriel is the first birth child for Re­becca and her hus­band Suky. Their daugh­ter Ruby, 12, is adopted. Re­becca says Ruby is ‘amaz­ing’ with her brother: “She ab­so­lutely adores him.”

The risk of Down’s does in­crease with ma­ter­nal age, but be­cause more older moth­ers tend to take up di­ag­nos­tic tests, just as many Down’s ba­bies are born to younger moth­ers.

Over the past 25 years there has been an in­crease in the num­ber of preg­nan­cies af­fected by Down’s, which health au­thor­i­ties be­lieve is the re­sult of more cou­ples de­lay­ing hav­ing a fam­ily un­til later in life. But be­cause of the high rate of abor­tion rates the ac­tual num­bers born have not in­creased greatly.

Ac­cord­ing to the Down’s Syn­drome As­so­ci­a­tion, 1 in ev­ery 1,000 live births is af­fected by Down’s and there are 40,000 peo­ple in the UK with the con­di­tion.

While Gabriel has brought joy, Re­becca ac­knowl­edges that his ar­rival has also put de­mands on both her and the fam­ily. She gave up her job as head of busi­ness and eco­nom­ics at Ras­trick High School and, with a col­league, Jackie Har­row­smith, de­cided to launch a small in­de­pen­dent art school.

She ex­plains: “I found be­ing full time and jug­gling fam­ily life re­ally hard work. It’s ex­tremely dif­fi­cult with any child, but I had a lot of ap­point­ments with Gabriel and teach­ing is such an in­flex­i­ble and in­tense ca­reer that I just couldn’t do it.

“I did sup­ply teach­ing at first but even­tu­ally we set up Globe Arts in June 2014. I do the busi­ness and or­gan­is­ing side of it and teach a bit of craft. It en­ables me to work part-time in school hours.

“Out of the par­ents I have met with Down’s chil­dren, I don’t know any mums who have con­tin­ued in their ca­reers.”

But she re­mains up­beat about the fu­ture: “Gabriel has a learn­ing de­lay, but we don’t re­ally know what he’ll be ca­pa­ble of. We’re just go­ing to pur­sue op­por­tu­ni­ties for him and see where it goes.”

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