Katharina McGregor

Katharina McGregor

Home undergoes makeover to help terminally ill girl

So often we measure a community by its physical amenities — its parks, neighbourhoods and facilities.

So often we measure a community by its physical amenities — its parks, neighbourhoods and facilities.

But is it really anything much at all without the power of people, maybe with a touch of another power as well?

For one little girl, who has been dealt the great misfortune of a fatal illness, and for her family, the community response seems like a bit of a miracle.

Ten-year-old Katharina McGregor has Niemann-Pick Type C (NPC), a genetic metabolic disorder. Diagnosed three years ago, doctors estimated the Blackfalds child had only five years to live.

There are just 500 cases of the disease worldwide. It stops her body from metabolizing cholesterol properly. Instead of gathering in the heart and arteries, the cholesterol ends up in her liver, spleen and, worst of all, her brain. As she becomes more affected, young Katharina will eventually lose all her brain function.

Slowly she is becoming more disabled and now spends a lot of time in her wheelchair.

If it weren’t enough to see your first-born child slipping away, her parents, Terese, 35, and Amory McGregor, 36, have been challenged by a few other setbacks.

Terese has had back surgery. Amory was laid off from his oilpatch-related job, and only recently found work on a road crew. Unfortunately it takes him away a lot. The couple have two other children — Dominik, eight, and Jarrome, six.

While Katharina’s illness is genetic, neither of the boys are showing any signs of having Niemann-Pick.

Recently, the family learned it was chosen to be this year’s Neighbours Project — a community effort spearheaded by the international organization A Better World, based in Lacombe.

The Neighbours Project will see the McGregors’ home undergo an extreme makeover, similar to the TV rendition, to make needed adjustments before Katharina becomes more disabled.

Project co-ordinator Ronda Ziakris says that starting on Saturday, over 100 volunteers will begin renovations.

“It’s a heartbreaking story. So we go in hook, line and sinker for two weeks and get this done.”

The McGregors will move out of their home during that time.

The project will see an accessible bathroom built where the boys’ bedroom is now, on the main floor, beside Katharina’s bedroom. She will end up with a suite, with a Disney Princess theme.

The boys will get a new bedroom in the basement, complete with a “really cool” Super Mario Brothers theme. There will be a main floor laundry built to make it easier for Terese who has difficulty with stairs because of her back. As time goes by, and Katharina gets sicker, the laundry will increase.

The renovation will also include a lift. Ziakris said the lift was donated by an Edmonton family whose child recently passed away and who wanted to pay it forward. “We’re thrilled. Lifts are very expensive.”

In fact, everything is being donated for the project, which is worth between $50,000 and $60,000.

The donations, including all product and labour, come from Central Alberta business and corporations.

“Oh my goodness. It’s amazing. Like we have this thing that we deal with and it’s life, but a big, big stress has been: How are we going to get her into the house? How are we going to bathe her?” said Terese, a stay-at-home mom.

“For them to come in and just do this is amazing. It’s life-changing.”

Katharina is described as a happy, funny, amazing little girl, who loves playing video games, watching movies and swimming.

“She’s doing well. … She’s doing amazing,” says Terese.

In fact, she’s doing better than doctors thought she would. Her medications aren’t expected to increase the amount of time she has, just the quality of time that she has, Terese says.

“She has good days and bad days … all she really knows is that her brain won’t tell her body everything she wants it to do.” Katharina is difficult to understand when she talks because her tongue is slowly becoming paralyzed.

She is in a regular class with a bunch of her friends at St. Teresa of Avila School in Red Deer. She has an aide in class.

Katharina was tested for Niemann-Pick when she was two. It turned out to be a false negative result. It wasn’t until she was seven that doctors finally verified she had the disease.

“It was a blow, but our faith is a huge part of it. We have very strong faith and we turn to God for our strength,” Terese says.

The McGregors would not have been able to afford the renovations so they are very thankful for the Neighbours Project.

“They’ve just completely answered all of our prayers.”

Anyone who would like to volunteer can contact Ziakris at rziakris@abwcanada.ca.