Lit­tle Maryam’s smile is a bea­con of hope in a sea of rub­ble that looks like a war zone. The three-year-old runs un­co­or­di­nat­ed but un­trou­bled, bliss­ful­ly un­aware that a sim­ple stum­ble could send her ca­reen­ing in­to a pile of dried, point­ed and bro­ken tree branch­es. If she miss­es those, the rust­ed and jagged edges of old ap­pli­ances and sheets of gal­va­nize scat­tered across the yard are an even greater per­il.

An un­us­able, seat­less met­al swing set sus­pend­ed over bro­ken clay bricks is a macabre re­minder that this is no longer a wel­comed place for a child.

The wood­en shed where Maryam and her fam­i­ly seek shel­ter groans with the high breeze, warn­ing of a pos­si­ble col­lapse.

Yet still, the child plays. This is her home.

Her moth­er, Al­isha Ali, 46, is aware of the chaos around her and the di­rec­tions to their Char­lieville home are more ac­cu­rate than any nav­i­ga­tion app, “Turn on­to Jameel Trace, op­po­site a green apart­ment build­ing, you’ll find a yard full of rub­bish and the pret­ti­est lit­tle down syn­drome ba­by liv­ing there.”

Maryam is in­deed a beau­ty.

“She’s a jol­ly ba­by, I mean just look at her, she’s very beau­ti­ful,” Ali said proud­ly as the child’s fa­ther, Im­ran Khan, played with Maryam.

Ali said be­fore birth, she knew Maryam would have chal­lenges.

“I had an idea that she would have Down syn­drome when I was six months preg­nant be­cause the anom­aly scan showed that her stom­ach was not con­nect­ed to her in­testines and her two kid­neys were swollen,” she said.

Cast­ing a lov­ing but con­cerned look at her daugh­ter who is still strug­gling to speak at age three be­cause of her dis­abil­i­ty, Ali said Maryam has al­ready had to face more surg­eries than any child should.

“They took Maryam when she was born to NICU and with­in 22 hours she had her first surgery where they con­nect­ed her in­testines to her stom­ach. She was in NICU for about nine days and when she came out, she had an in­fec­tion and she had to have an­oth­er surgery, and when she was get­ting her sec­ond surgery done, they cut her liv­er by mis­take and that caused a third surgery,” Ali said.

As a re­sult, Maryam has to vis­it clin­ics in Mt Hope and Ch­agua­nas at least three times a week.

“For her thy­roid, ears nose and throat, eye clin­ic, we’re still wait­ing on the hear­ing tests. She sees a di­eti­cian and that’s all I can re­mem­ber right now but her de­vel­op­ment is very slow,” Ali said.

Maryam’s home is not con­ducive to her de­vel­op­ment. It’s a sad re­minder that some­times, love is not enough.

“She can’t play out­side. It’s in­fest­ed with snakes, snails, cen­tipedes and scor­pi­ons so it’s a lot,” Ali said.

Point­ing to di­lap­i­dat­ed and fad­ed black wa­ter tanks at the side of the house, she ex­plained: “We don’t have clean wa­ter all the time. As you can see, we col­lect rain­wa­ter, and I can’t risk emp­ty­ing the tank al­though there are mos­qui­to lar­vae liv­ing in it. Maryam has a lit­tle rash right now be­cause of the wa­ter that we’re us­ing.”

An em­bar­rassed Ali added, “I don’t have a bath­room, I bathe out­side. Maryam bathes out­side, and in the night­time, she has bel­ly prob­lems. Some­times with the surgery, she tends to use the bath­room three or four times a day and it’s risky be­cause cen­tipedes crawl all there. In the night I don’t have a light and can­dles aren’t enough to see what I am do­ing.”

The child’s fa­ther opened the tap from the tank to demon­strate. Maryam shrieked in de­light and ran over to play in the wa­ter. It was quick­ly shut off af­ter Ali re­mind­ed him, “We can­not waste this.”

The rem­nants of a can­dle, now re­duced to an un­du­lat­ed slab of wax in their one-room home are proof that wa­ter is not the on­ly ameni­ty the fam­i­ly has to do with­out.

“It had elec­tric­i­ty, but we did not know it was an il­le­gal con­nec­tion un­til last week Wednes­day and we got cut off,” Ali said.

She point­ed out a stove un­der the shed and at­tempt­ed to light one of the burn­ers with a pair of pli­ers and a lighter. Af­ter sev­er­al clicks, noth­ing hap­pened.

The fam­i­ly of three’s tiny home is a shell—just walls and a roof that they have no claim to.

There is very lit­tle mon­ey to im­prove their sit­u­a­tion. They de­pend on Maryam’s $1,500 a month dis­abil­i­ty grant and most of it is spent on the tod­dler’s needs.

“I have to get saline drips, some­times three or four bot­tles for the week, then she needs a nasal spray and if I don’t get it in the phar­ma­cy, I have to spend $300 to $400 for that. And then I don’t even get clothes, I al­ways ask peo­ple for clothes, every­thing that she owns, noth­ing is new from since birth ac­tu­al­ly,” Ali said.

Asked what pre­vent­ed them from earn­ing an in­come Ali, nod­ding to the child’s fa­ther, ex­plained, “Well for him, he had got­ten shot a few years ago and he was in a lot of clin­ics as well. He gets seizures a lot. He’s al­ways look­ing for jobs, just re­cent­ly he was work­ing, and he got a seizure on the job, and they let him go and then I can­not work, I am Maryam’s full-time care­tak­er.”

Here Ali paused, and for the first time in the in­ter­view, tears welled in her eyes.

“I just want her to see beau­ty, at least to see a flower, or see some­thing nice, be­cause it’s on­ly rub­bish all over. Maryam is so in­no­cent. I even got a ham­mock tied here but she al­most fell in the rub­bish. There is lit­er­al­ly nowhere she can get some ex­cite­ment or have some­thing to play with.”

“I feel like I am a fail­ure,” Ali said, chok­ing on the words as they came out.”

Tak­ing a deep breath she col­lect­ed her­self, then added, “I know deep down I am do­ing my best but I wish I could give her more. At least a prop­er shel­ter where she can watch a tele­vi­sion, she likes some of these Co­comel­on videos to help with her de­vel­op­ment and learn­ing videos.”

Look­ing at Maryam lov­ing­ly, Ali said, “I just feel like I need a lit­tle place to call home for her, where she can play and be her­self in­stead of hav­ing to wor­ry that she is pick­ing up a nail, or some­thing will bite her, or this (shed) will fall on her. It re­al­ly takes a toll on me be­cause every minute I have to be pro­tect­ing her.”

The fam­i­ly needs a new home, sup­plies for Maryam or as­sis­tance with ac­cess­ing wa­ter and elec­tric­i­ty.

Any­one wish­ing to as­sist can con­tact Al­isha Ali at 305-3315 or Im­ran Khan at 328-3250.