At 26-years-old Surya Ho­sein holds a black belt in taek­won­do and boasts many ac­co­lades and awards in the dis­ci­pline.

He is a lover of mu­sic and works a full eight-hour work shift like many of us.

For the most part, he is just a ray of sun­shine, as his name “Surya”—San­skrit in ori­gin, sug­gests. But there was time his par­ents, Steve and Shel­ley Ho­sein, feared an ab­nor­mal life for him, hav­ing been born with Down Syn­drome.

Surya’s birth came just one month af­ter the Ho­seins had lost their five-year-old son Troy in a fire at their home. Shel­ley tells Guardian Me­dia of the painful ex­pe­ri­ence, re­liv­ing that mo­ment briefly, when she had to jump from their two-storey home at eight months’ preg­nant with Surya, to es­cape the fire.

Ac­cord­ing to Steve, though the pain of los­ing a child was heavy, they looked for­ward to hav­ing their “gift” who was soon to be born. But what would hap­pen next, came as a dou­ble blow for the Ho­seins who were not pre­pared for the news, they would sub­se­quent­ly re­ceive.

“When he was born, he had jaun­dice, so he had to stay at the hos­pi­tal for a while. Fi­nal­ly, when I got home and we took him for his first vis­it to a friend of mine who was a pae­di­a­tri­cian, she said, “You know, I have to run some tests on Surya, be­cause I think he has Down Syn­drome.”’

Tests, lat­er re­vealed that he was. The news was shat­ter­ing for the Ho­seins who felt “cheat­ed” hav­ing al­ready lost one son and now hav­ing one who, at the time, they felt would have a poor qual­i­ty of life.

“Not hav­ing any idea what that meant, for me Down Syn­drome peo­ple were seen through a win­dow in a house, al­ways kept away, and this “R” word—re­tard­ed, it was like, oh my God, what more can we be giv­en?” Shel­ley re­calls.

The emo­tion­al bur­den be­came lighter, with help from fam­i­ly and friends, and the warm ac­com­mo­da­tion of Surya, by a lone in­sti­tu­tion at the time, which ac­cept­ed chil­dren with dif­fer­ent abil­i­ties.

Re­fer­ring to the Ig­bo and Yoru­ba proverb—It takes a vil­lage to raise a child, Shel­ley re­lates, both she and hus­band Steve, de­cid­ed they were go­ing to give their Surya the best life that he could have. And so, the fam­i­ly would come to­geth­er quite of­ten to en­sure Surya al­ways felt loved and in­clud­ed.

This kind of nur­tur­ing would pos­i­tive­ly im­pact Surya, who though hav­ing chal­lenges, was able to eat on his own and walk at the age of one. Med­ical­ly, for a child with Down Syn­drome, walk­ing usu­al­ly oc­curs around 28 months. This proved to the Ho­seins, their son could have done any­thing a “reg­u­lar” child could do.

While this was in­deed a mile­stone to cel­e­brate, the Ho­seins faced yet an­oth­er hur­dle—they could not find a sin­gle pri­ma­ry school that would en­rol a child with Down Syn­drome. So in­ef­fec­tu­al the search, they would even­tu­al­ly have to open their own school.

“We had to set up our own school. We took it up­on our­selves to buy sec­ond-hand equip­ment from oth­er schools and we set up a place called Bliss Learn­ing Cen­tre at Syden­ham Av­enue, St Ann’s Port-of-Spain, be­cause there was no place for Surya to go to get a pri­ma­ry school ed­u­ca­tion,” Steve said.

As Surya out­grew Bliss, he was sent to Good­will In­dus­tries Spe­cial School, where he ex­celled, but it would al­so be­come the place where he had his first en­counter with ‘name call­ing.’

“Surya told me one day at school, a friend called him the “R” word. He said ‘Mom­my, I went straight to Ms Allen (school prin­ci­pal), and I told her and she fixed him up,’” re­called Shel­ley.

Steve ar­gues, it is the lack of pub­lic ed­u­ca­tion on peo­ple with dis­abil­i­ties which has left them be­hind. He feels the Gov­ern­ment, as well as the pri­vate sec­tor, needs to do more in this re­gard.

Guardian Me­dia al­so learned the par­a­lympian is a huge fan of so­ca star Machel Mon­tano and al­so be­lieves Mon­tano is a huge fan of his.

“There’s an al­tar in the room right now with Machel’s pic­tures and CDs,” Steve said, point­ing in the di­rec­tion of Surya’s bed­room.

At his job at Dig­i­cel Imax, his par­ents say, he is ab­solute­ly adored and treat­ed with ut­most re­spect.

Asked what was their mes­sage to the world and to par­ents like them­selves, who at times have al­so felt “cheat­ed,” the Ho­seins re­spond­ed: “Al­ways seek out as much in­for­ma­tion as you can and nev­er think of ex­clu­sion, al­ways think of work­ing to­wards in­clu­sion. Be bold about what you do with your child and for your child, and nev­er give up on any in­cli­na­tion that your child might have, just work with them in that area.

“De­vel­op their full po­ten­tial with all the love that you can give them.”

“In this so­ci­ety, if peo­ple were as lov­ing and for­giv­ing as Surya is, as hap­py all the time as he is…hold­ing no prej­u­dice, we’d have a bet­ter world,” Shel­ley said.

World Down Syn­drome Day was ob­served on March 21 with the theme Leave No one Be­hind.

As part of Guardian Me­dia’s com­mit­ment to lead by ex­am­ple–high­light­ing the so­cial is­sues that mat­ter to you, it em­barked on the cam­paign—”Word Up” on Down Syn­drome…Lend Your Voice. The cam­paign fo­cused on the ad­vo­ca­cy for so­cial in­clu­sion of com­mu­ni­ty, and al­so shared some in­ti­mate sto­ries of some of the chal­lenges faced by this com­mu­ni­ty.