Heather Amlin

“Addy’s Angels” hold fundraiser for four-year-old with mitochondrial disease

 

 

By Ron Giofu

 

Four-year-old Addy Weith and her mom Lisa came to Amherstburg Sunday on the weekend where Addy was the guest of honour.

A group of volunteers known as “Addy’s Angel’s,” which include Addy’s grandmother Mickey Dinunzio and great-aunt Heather Amlin, presented a fundraiser for “Addy’s Journey.” The Sunday fundraiser at the Columbus Community Hall raised money to pay for a bus to go Hudsonville, Michigan Aug. 5 for a large fundraiser there. Hudsonville is where the Weith family, including Addy’s twin sister Norah and dad Eric, live.

“It’s overwhelming,” said Lisa. “I saw the parking lot and thought ‘oh my goodness.’ It’s pretty special.”

Lisa is originally from Amherstburg and is a graduate of General Amherst High School. She said it was great to be back in her hometown, reconnect with people she hasn’t seen in a while, and know it is all to help her daughter.

Addy’s Angels, a local group raising money to help four-year-old Addy Weith, held a fundraiser last Sunday. (Photo by Danica Skakavac)

There was a hospital stay for Addy a few weeks ago that Lisa described as “rough,” as Addy was in intensive care for a few days. She recovered from that and the family hopes she stays in good health for a while longer.

Mitochondrial disease, also known as Leigh Syndrome, 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. As Addy and her family deal with that, they are comforted by the fact there are fundraisers such as the one Sunday and the one in Hudsonville Aug. 5. Another recent event for Addy and her family was a special day on a trolley with her favourite TV character Daniel Tiger.

Dinunzio said details will be forthcoming in the foreseeable future about how people can get on the bus and visit with the family in Michigan in August. She said they were ready for over 100 people last Sunday.

“It’s a small town with a huge heart,” she said of Amherstburg.

“Everything was donated, even the hall,” said Amlin.

Amlin pointed out the Weith family has a great support system on both sides of the border.

“It’s just incredible the amount of people who are involved,” added Lisa. “Saying thank you doesn’t seem big enough for everything we’ve been getting.”

For more information on the Aug. 5 event in Hudsonville, Michigan, e-mail heather_amlin@yahoo.ca or brouwer.1@hotmail.com. People can also call Amlin at 519-713-9293.

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.