The avowed Fortinos shopper said she hopes her usual grocery store, and all others, start to offer the special cart.

“I really hope that the purchase of Caroline’s Carts in our Burlington grocery stores will enable families with kids with special needs in our community to go shopping with their kids.”

Fortinos is part of Loblaw Companies Ltd., along with other grocery store banners like No Frills and Real Canadian Superstore.

In an email to the Post, the Loblaw public relations department recently confirmed it is acquiring some Caroline’s Carts.

“We have a few stores in the GTA where we have recently purchased Caroline’s Carts and are awaiting delivery, for example, our Real Canadian Superstore in Whitby and all four of our Fortinos locations in Burlington. The specialized carts were purchased as a result of customers’ requests….”

The Burlington Fortinos stores will receive one cart each.

Sobeys Ontario communications specialist Monika Strzalkowska told the Post their grocery chain was the first retailer in Canada to begin using the cart.

“Caroline’s Carts are part of the standard package of carts going into all new Sobeys locations. In the Burlington and surrounding area this would be our Brant Street location, Flamborough, Ancaster and St. Catharines,” said Strzalkowska.

A Caroline’s Cart has a retail cost of $850.

* * *

On a day in early March, the almost constantly smiling Alyssa is giggling and celebrating her fifth birthday.

While she waits for her father Kyle to come home, she plays with a talking iPad (with Proloquo2Go assistive software). It enables her to touch buttons to access symbols and subjects she recognizes. The electronic device talks to her and allows her to ‘speak’ to others letting them know what or how she is feeling and what she wants to do or say.

“She is very with it. She can feed herself on her own but requires support for the bathroom and dressing,” said Kathryn.

In relative terms, the Nichols family is fortunate as Alyssa is in a minority sub-group of those with Angelman who have a less severe form of the genetic disorder.

The Canadian Angelman Syndrome Society (CASS) says about 70 per cent of those with the condition have a defective gene from their mother’s chromosome 15 region, a partial deletion of the genetic material on that particular chromosome. These individuals have more pronounced physical challenges.

People without Angelman have received complete, unaltered chromosome 15s from each parent.

However, Alyssa is among a small group, about seven per cent, of those with Angelman who has Angelman UPD; she has the usual two complete chromosome 15s but both come from her father.

“We knew at three months she had some developmental delays. Normally they are diagnosed between 12-18 months old. Alyssa was diagnosed at four years old,” said Kathryn.

The Ontario health ministry covered the expensive genetic testing, thousands of dollars worth, done on Alyssa to try to determine what was causing the youngster’s difficulties such as sleeping very little, limited mobility and almost no ability to speak.

“She probably won’t develop (full) speech. She can say ‘dada’ and ‘mama’,” said Kathryn.

“All the genetic testing (on her) didn’t come back with a chromosome deletion. She wasn’t having any seizures until the age of four, which is a late case for seizures (for someone with Angelman).”

Kathryn said her daughter rarely sleeps. They put her to bed from around 8-10 p.m. and that starts a pattern of Alyssa getting up for an hour then back to sleep and then up again and so on.

“We are constantly putting her back to sleep. She will not go to sleep on her own…. She’s been that way since we got her home from the hospital,” she noted.

“Alyssa does have a lot of anxiety…. She does show a lot of other emotions where she is not smiling.”

The difficulties facing Alyssa and the daily challenges the Nichols have in looking after her aren’t reflected in the little girl’s general demeanor.

“They are definitely happy and joyful to be around. They love life. They are very social and generally happy,” Kathryn said of Alyssa and kids like her.

“Everybody who meets Alyssa says she has the most beautiful smile.”

The youngster currently attends the St. Christopher’s Co-op nursery school four days a week. On the other weekday she receives intensive occupational, physical and speech therapy through ErinoakKids.

“She definitely needs one-on-one support,” said Kathryn.

She says they are lucky that come this September Alyssa will attend either Lakeshore or Ryerson elementary school for kindergarten.

Kathryn is a kindergarten teacher at Lakeshore P.S. While she wouldn’t have direct involvement in her daughter’s in-class learning if she goes there, she could take her to and from school each day.

Besides access to an educational assistant (EA) when in school, Alyssa has ongoing support from a pediatrician and a neurologist from McMaster Children’s Hospital in Hamilton.

She has prospects for incremental degrees of improvement in her life, says her mother.

“She has a normal life expectancy. Her balance will continue to get better. She should be able to get better at running and jumping with lots of therapy and practice.

They hold out hope she will be able to hold a job someday.

“We still haven’t met a(nother) child with (Angelman) UPD so we don’t really know what she is capable of doing.”

The Nichols know of at least three families in Burlington that have children with other forms of Angelman.

Their search for parents caring for a child with the rarer form of Angelman UPD took the Nichols to Chicago last December.

They attended a conference where neurosurgeons discussed clinical trials where mice had been treated and apparently cured of the condition. The next step is human trials. In Chicago, the Nichols met actor Colin Farrell, whose 10-year-old son James also has Angelman syndrome.

“He met with every parent and they took photos together,” said Kathryn, who got her own photo with the actor and her husband at the Foundation for Angelman Syndrome Therapeutics (FAST) 2nd Annual Global Summit.