Baldwinville family raises funds for daughter’s therapy through shoe drive

TEMPLETON – The Lemieux family has begun a charity project to help businesses in developing nations, while also raising money to provide medical care for their 3-year-old daughter Avia.

Avia has Pitt Hopkins Syndrome, a neurodevelopmental disorder which only affects around 1,600 people worldwide, according to the Pitts Hopkins Research Foundation. The disorder has affected her speech, cognitive development and mobility, including her ability to walk.

The gene that causes Pitt Hopkins is implicated in various other disorders too, including schizophrenia, autism, fuchs corneal dystrophy, and liver disease, according to the foundation. Though the cause is known, there are no pharmaceutical treatments available.

As a result, the family is fundraising for an intensive, two-week physical therapy program costing $3,750 – none of it covered by insurance, according to Avia’s mother, Jamie Lemieux.

The family is hoping to collect 2,500 pairs of gently-used shoes. These will be sent to Fund2orgs, which will recondition the footwear and send them to microbusinesses in other countries.

These businesses are usually family-owned, and started because systemic poverty in many developing countries forces working-age adults to create their own economic opportunities, according to the organization’s web site. These businesses could be as small as a stall or a brick-and-mortar shop, and shoe drive fundraisers provide the inventory.

The Lemieux family will be paid 40 cents for each pair of shoes that are sent in. The 2,500 shoes the family hopes to collect would provide $1,000 toward the cost of the therapy. Currently, they have filled more than 40 of the 100 bags of shoes they hope to have by the end of June.

“I did not find out that Avia had this syndrome, this disease, until she was 10 and a half months old, through genetic testing,” said Jamie Lemieux. “She was born with hammertoes, and I just though her feet were just unique. I had no idea that that was a genetic marker.”

As Avia grew older, said Jamie, “We started to see that she was missing milestones. She wouldn’t move her arms very much and was very still, couldn’t really roll over. There were things that weren’t really happening. And she just was not responding the way a typical child does.”

After taking Avia to see doctors in Boston and Worcester and getting no answers, Jamie Lemieux said, “I prayed to the Lord to lead me to what was wrong with our daughter. I found a book called ‘Every Good and Perfect Gift’ and I started reading. It’s about a mom who has a child with Down syndrome….She talks about all the genetic testing that needs to be done. So, I called Boston Children’s Hospital and told them I needed to get genetic testing done for my daughter.”

After 10 months of waiting, results from one of the tests indicated Avia has Pitt Hopkins Syndrome. Avia now visits the Pediatric Therapy Center in Nashua, New Hampshire, three times a week.

With pre-school starting in the fall, Jamie said the goal is for Avia to be able to walk on her own with the assistance of a walker.

“She has the strength to walk,” Jamie said. “She is standing and fully using the strength of her legs (with the assistance of braces).”

In addition to all of Avia’s other challenges, said Jamie, she is unable to feed herself and deals with a number of dietary restrictions.

“We fight so hard to keep her diet well so she doesn’t end up on a G (gastric) tube,” said Jamie Lemieux. “She’s gluten-free, she’s dairy-free, she’s nut-free, she’s egg-free.”

Jamie and her husband Daniel have four other children: Azaria, 13, William, 12, and Declan and Noah, both 10.

People with shoes to donate can drop them off at Hometown Real EstateTeam, 361 Main St., Athol. Other dropoff locations include Deer Creek Farm Bagels and Breads at 368 Patriots Road, Templeton; Reno’s Pizzeria at 32 Patriots Road, Templeton, and the Templeton Police Department.

A shoe collection event will be held from noon to 2 p.m. at the Templeton Food Pantry, at 16 Senior Drive, Baldwinville, on Saturday, May 30.

The therapy would be done several times, costing $11,250 for all the treatments. Monetary donations can be made at www.supportnow.org/avia-s-journey.