Addy’s Mitochondrial Journey Bus

Local relatives to help four-year-old Michigan girl

 

 

By Ron Giofu

 

Four-year-old Addy Weith may live in Hudsonville, Michigan but she has plenty of support in Amherstburg.

Addy is suffering from mitochondrial disease, also known as Leigh Syndrome. It is a severe neurological disorder characterized by progressive loss of mental and movement abilities. The disease typically results in death in two to three years after diagnosis due to respiratory failure.

Addy’s mother Lisa is an Amherstburg native with her grandmother Mickey DiNunzio and great-aunt Heather Amlin organizing local efforts to try and help the Weith family, which also consists of Lisa’s husband Eric and Addy’s twin sister Norah.

DiNunzio said her daughter noticed about two years ago that Addy was “not developing as fast as the other twin” and that led to medical visits to see what was wrong. Two spots were discovered on Addy’s brain and the diagnosis came shortly after.

Eric and Lisa Weith hold their twin daughters Norah and Addy. (Submitted photo)

A fundraiser is planned in Hudsonville Aug. 5 from 4-7 p.m. but efforts are being made in Amherstburg to send a group of “Addy’s Angels” to the fundraiser. A local event is being planned for June 10 at the Columbus Community Hall on Richmond St. to help pay for the bus that family members in Amherstburg will use to take to the fundraiser.

The Amherstburg event will run from 12-4 p.m. with information on bus tickets available as well as door prizes, silent auction items and food being on hand. The local event is being dubbed as a fundraiser for “Addy’s Mitochondrial Journey Bus” and tickets are $20.

“We’re trying to do something locally in Amherstburg,” said DiNunzio.

“We’re getting the Canadians and Americans there as one big family,” added Amlin.

DiNunzio said they don’t know how much time Addy has left but Amlin pointed out that palliative care has been suggested for when the time comes. Amlin added the fundraiser in Hudsonville is a way to create positive memories for Addy and her family.

A package is being distributed locally describing the fundraisers and why they are being held. A letter from the family inside the package describes Addy as a brave fighter who loves books, blocks, baby dolls and “anything that involves getting messy.”

“She runs, jumps and plays with her twin sister Norah. She loves pre-school. She is always excited to go, even when she is too sick to attend,” the letter states. “She loves Daniel Tiger and Pete the Cats.”

The letter further states that “Addy’s most recent MRI shows her disease is progressing. We have known it was a possibility but we have prayed it would not be true.”

Mickey DiNunzio plays with grandchildren Norah and Addy Weith in Navy Yard Park. Fundraisers are now being planned for Addy, who has mitochondrial disease. One of the fundraisers is June 10 in Amherstburg. (Submitted photo)

Amlin and DiNunzio compare Addy’s condition to that of a cell phone battery. While Addy will have tremendous energy for a few days, she can quickly find her energy and strength depleted shortly thereafter.

The disease could shut down Addy’s muscles so the family is also looking at such things as wheelchairs and ramps.

“You don’t know what part of the body it’s going to go after,” she said.

For more information, e-mail heather_amlin@yahoo.ca or brouwer.1@hotmail.com. People can also call Amlin at 519-713-9293.