Fundraiser underway to help Brookline boy with special needs get new wheelchair

There is a beep outside.

Tracey Mozeyko peers out the window.

“Timmy’s home,” she said, referring to her 14-year-old son.

An aide assists the boy out of his seat. Timmy gives the aide a hug and then turns toward his mother. He reaches for her hand and they walk into the house.

Timmy requires care in all areas of daily living. His mom helps him take his coat off and he sits in his feeding chair, a routine they do every. He does not eat or drink by mouth and is fed four times a day via a gastrostomy tube, also called a G-tube, which is inserted through the belly and brings nutrition directly to the stomach.

She looks through his daily progress report and asks him questions. He gives a few one-word answers, sometimes tilting his head to look at her.

Timmy likes the routine of riding on a bus to and from Pittsburgh Pioneer Education Center in Brookline versus a wheelchair van. This is his one area of some independence, one he might lose if he can’t get a piece of equipment he needs.

He has a wheelchair he uses at home, but it’s not small enough to fit in the passenger van. Because he requires a longer chair with a pole for his tube feeds, which includes a Farrell valve bag that continuously vents his stomach, it must be elevated. He also needs a lap tray to deter him from pulling his tube out.

Timmy needs a wheelchair at school to provide for outings, long distances and his lunch feedings.

He has outgrown his current chair. At 5-foot-8, the headrest is too low and he can’t stretch out his legs. He also has a tailbone issue and needs extra cushioning. Timmy can walk, and being out of the chair at times helps alleviate some of the pressure on his tailbone.

“The little bit of independence he has is riding the bus,” said Mozeyko, of Brookline. “The fact that I have to fight insurance companies for wheelchairs, feeding chairs and medical equipment only to get denied as if I’m asking for tickets to (Walt) Disney (World) and being made to ask for hand-me-downs, handouts and fundraisers for things that are a necessity is despicable. I am his voice. We are their voice. “ 

Mozeyko has been Timmy’s advocate since before he was born.

She was diagnosed with placenta previa at four months pregnant, a problem during pregnancy when the placenta completely or partially covers the opening of the uterus. She was admitted to UPMC Magee-Women’s Hospital in Oakland at five months pregnant. At eight months she was told that the condition had resolved and was sent home.

Two days later her placenta abrupted. The placenta separated from the uterus. She was taken to the hospital via ambulance where an emergency c-section was performed. She required blood transfusions.

It was May 11, 2009.

Timmy wasn’t breathing. She was told his condition was due to a lack of oxygen and trauma during childbirth.

“Due to both of us requiring care after his birth, I was unable to see him until the following day,” Mozeyko said. “I can remember arguing with my sisters that he didn’t make it because I couldn’t see him. What an experience to go to sleep pregnant, wake up not pregnant with no baby in sight. It was awful.”

Timmy had trouble with sucking and swallowing and wasn’t reaching typical physical milestones. He was diagnosed with autistic disorder and congenital hypotonia, a condition that affects muscle strength, motor nerves and the brain. He also has laryngeal cleft palate, which can cause aspiration when food or liquids enter the lungs.

“We were told ‘he’s never going to be the kid who’s hitting home runs on the team,’” Mozeyko said. “Although it was just a sentence, that sentence held so much weight to me.”

He spent time at The Children’s Institute inpatient in Squirrel Hill for therapy. His therapy is ongoing because of his special needs. Timmy is on Social Security disability, which covers one wheelchair every five years. Mozeyko cannot work full-time because her son requires 24-hour care. She left her job as a certified nursing assistant to become his paid caregiver due to in-home staffing issues. Timmy cannot dress or bathe himself or verbalize his wants or needs. He is incontinent and requires frequent checks and changes.

School is some of the best times for Timmy.

On Friday, he was able to ride an adaptive bicycle through the halls at Pioneer. Pioneer principal David Lott has worked at the school as long as Timmy has been a student there. He said the proper size wheelchair would be a safe place for Timmy and would make him happy because he would be comfortable.

Massoud Hossaini | Tribune-Review

Timmy English, 14, rides his bike as Maria Paul, a multiple disabilities teacher, monitors his route through the halls at Pittsburgh Pioneer Education Center in Brookline on Friday.

Maria Paul, multiple disabilities support teacher at Pioneer, said part of Timmy’s disability is his muscle tone and posture and having a chair that is too small can disrupt his day.

“He might get upset and he can’t verbalize his emotions and feelings to us, so something like a wheelchair that is too small can throw off his school day,” Paul said.

Most people do not see or can fully understand the day-to-day of caring for a special needs child, said Kelly Ann Dorsch, a registered nurse for Extended Family Care — Pittsburgh. Timmy is Dorsch’s patient. She organized a GoFundMe and an auction that runs through 10 a.m. Saturday to raise money for Timmy’s school wheelchair.

Auction items include Pittsburgh Steelers tickets, air pods, gift cards and a portrait of Timmy made by Dorsch’s father, Ken Wagle. Several local businesses have donated services. One of the items, “Bryan’s Favorite Things Bundle” is from Bryan Miller of PA Capital Mortgage. He said he will show up to that person’s home dressed in a Batman suit in his Lamborghini for a photo opportunity if someone doubles their donation for his auction item.

The goal is $10,000. As of Friday morning, $5,124 had been raised, enough for a basic wheelchair, which costs $4,500.

The rest of the money will assist with upgraded padding, wheelchair and feeding pole accessories and future out-of-pocket ongoing medical expenses. Once an order is placed, it can take weeks or longer to get the wheelchair.

“The incredible love, care, patience, advocacy, et cetera — there are therapies, hoops, stacks of paperwork, tears,” Dorsch said. “Decisions are (being) made by people who have never even met Timmy. To know Timmy is to love him.”

Dorsch and Mozeyko discussed appeals to insurance. People caring for Timmy wrote letters. They looked for grants and other resources before deciding on the auction and GoFundMe.

“To see all of the love for Timmy is wonderful,” Mozeyko said.

A single mother of three, Mozeyko said her children and her fiancé Steve Carroll, who is “wonderful and loves her children like one of his own,” as well as other family members, have been dedicated to helping her care for Timmy since his birth.

This endeavor is about more than a wheelchair, Dorsch, of Bethel Park said. She hopes to make people aware this is what people are going through with special needs children.

As a mom of two boys, one with special needs, Dorsch understands the importance of Mozeyko wanting Timmy to have some independence.

“The special needs community is our most vulnerable population and needs to be treated as such,” said Mozeyko, as she hooked Timmy’s feeding tube. “They, along with their families and caregivers need more support, more resources. Timmy doesn’t play video games or have a lot of things, but he loves riding the bus, and I want him to be able to do that as long as he can.”