Elora benefit for tot with incurable illness

She can break hearts.

And also stir them.

Emily McNabb is only nine months old and she is under a sen­tence of death from a rare genetic disorder called spinal muscular atrophy (SMA). It is a degenerative illness that typi­cal­ly claims the lives of child­ren before they reach age 2.

The ailment is expensive to treat, and that is why people have been opening their hearts and their wallets to help Adam and Susan McNabb with the expenses involved in equip­ment that can at least make Emily more comfortable.

Susan McNabb said in an interview there are a few pieces of medical equipment simply not covered under health care benefits, such as a cough machine. Emily is so weak she cannot cough well, and that makes her particularly vulnerable to pneumonia.

“She gets sick easily,” Emily’s mom said. “We’ve met one other mother who is getting a cough machine.”

The problem is, that mac­hine costs $5,000.

But Susan McNabb said she and Adam have determined that if the fundraising is not in time to help Emily the money will have a good use.

“If it can’t help Emily, it can help another child,” she said.

Susan’s sister,  Janet Patter­son, started a trust fund for Emily at TD Canada Trust in Guelph. That account number for donations is 0516-6337349.

Word of Emily’s difficulties soon spread.

Her grandfather, George Howlett, lives in Elora and works at Sussman’s in Arthur. Howlett has coffee every morn­ing in Elora, where he got to know Kevin Kroetsch, the owner of Alex’s Restaurant.

Kroetsch said he wanted to help, and considered an auc­tion. Instead, he decided to combine a benefit dinner with a fashion show, and what better place to obtain fashions than from the place where Howlett worked.

Kroetsch said his offer was simply what people do when they live in small towns. They help each other.

Jennifer Bushey, of Suss­mans, said of Howlett, “He’s doing good. But it’s definitely hard on him.”

As for Sussman’s contribu­tion to the benefit, she said, “We are donating clothes and doing an auction of clothes.”

She explained that Kroetsch will provide models the night of the dinner who will parade through the restaurant, and peo­ple can bid on the outfits they are wearing.

And, she added, “We’ll give everybody there a $25 coupon if they come to Sussman’s.”

She said the clothing will be for men and women, and will come in various sizes.

Howlett said of Emily’s ailment, “It’s not very com­mon. We had never heard of it. There are some doctors out there who have never heard of it.”

With SMA, both parents have to be carrying the gene in order for it to be passed on to children.

Susan McNabb said one in 40 people has that gene. Emily is their first child, and she noted a doctor from Mc­Master told her and Adam if they have other children, there is a one in four chance that child will also get SMA.

She said they discovered Emily had it at about age five months, when she failed to reach normal “milestones” such as being able to roll over and do other movements.

Howlett said, “There’s no cure. Hopefully, that’s going to change.”

But, he admitted, “It’s not going to help Emily out.”

Week by week, the family can see her getting progres­sive­ly weaker.

There are two types of SMA. Type 1 victims usually do not live to age 2. Type 2 victims can live to reach adult­hood. Emily has Type 1.

“It’s tough,” Howlett said, add­ing both of his daughters are nurses. “They learn­ed about a month ago … They’re starting to accept it. Their main effort now is to make Emily comfortable.”

He said there is a heating blanket available, but it costs $4,000. He said he told Emily’s parents even though it is not covered by insurance, “You don’t look at the price. You have to try everything.”

He noted there are 30 children in southern Ontario who have had the disorder, and only two are still alive. Emily is one of them.

Adam McNabb said the response to his daughter’s plight has been “overwhelm­ing. We’re grateful for the sup­port.”

Howlett said he and Kroetsch not only have coffee, but they have golfed together.

“I certainly appreciate big time what he and Sussman’s are doing. I did not expect this.”

Tickets for the benefit are $79 each and are available by calling the restaurant at 519-846-1104, or visit www.alexs­kichen.com.

Kroetsch said if the ticket de­mand is large enough, he will consider holding two events.

The evening will consist of a five course dinner prepared by executive chef Dean Mich­iel­sen.

He said only the cost of the food will be covered by the ticket price, and all the labour will be donated that night. He is hoping to serve 80 people.