Family seeks help to buy van for student with dwarfism

WOONSOCKET – Sabina Piorkowski is a 19-year-old sophomore at Rhode Island College with a double major in computer information systems and finance.

She’s a member of a sorority, as well as other campus clubs, and holds a job part time.

She has lived most of her life with chronic pain, has undergone dozens of medical procedures, and is forced to depend on others for transportation to about 20 doctor appointments each month.

Piorkowski was born with Diastrophic Dysplasia, a rare type of dwarfism that occurring in one of 500,000 births. The condition affects cartilage and bone development, causing the person to have short stature, early onset of joint pain, scoliosis, and joint deformities with restricted movement. The joint problems often make it difficult to walk, and grow worse with age.

Piorkowski has had more than 19 major orthopedic surgeries on her spine, hips, knees and ankles. She is wheelchair-bound 90 percent of the time, and is scheduled to have her next surgery, an ankle fusion, in May of 2018.

Family members say Piorkowski, an honors graduate with Woonsocket High School Class of 2016, has not let her medical issues define her.

“Sabina through all this is a very happy, caring and selfless person,” said her mother Marzena Piorkowski. “She wants nothing more then to be fully independent.”

The family has launched a fundraising effort to purchase a wheelchair van, a vehicle they say would allow Sabina to travel independently to physical therapy and doctor appointments, shopping, work and more.

“It will give her the freedom and independence that now she can only dream about,” said Marzena.

The family, Marzena said, does own a lift, a van and an electric wheelchair, but the three items aren’t compatible to allow Sabina to travel alone.

“We talked about it for a long time, and we tried to do it on our own,” Marzena said.

New vans, she said, can cost more than $50,000.

“That’s on the cheap side. The prices were almost scary,” Marzena said. Instead, “we’re looking for something used, but not too old because we want something that will last her years,” she said.

The mother and daughter team has embarked on a major fundraising mission to pay for the expense. An online campaign has raised $2,700, and a cut-a-thon at a salon raised another $300.

On Saturday, Oct. 14, a comedy event at the family’s church aims to bring in more. The Funny4Funds Fundraiser will have raffles, an auction and a performance by some of Rhode Island’s best comedians. The event will be held at St. Stanislaus Kostka parish hall at 188 Harris Ave., with doors to open at 6 p.m., and the show to begin at 6:30 p.m. There will be food, snacks and non alcoholic beverages available for purchase.

The family is selling tickets, but they’re also looking for raffle items and sponsors for the comedy night out. For $100, sponsors will have their logo featured on the event banner and all event materials, as well as promotional items on the tables.

At RIC, Sabina holds a part-time job on campus in addition to the double major. She is a member of the Delta Phi Epsilon sorority, and is the treasurer for the school’s Advocacy & Beyond Club. She depends fully on others for transportation.

Her 5-year-old brother, Pawel Piorkowski, was also born with Diastrophic Dysplasia and currently eats through a feeding tube. He uses a wheelchair for long distances and post-surgery follow-ups, leaving mom Marzena to juggle 20 to 30 appointments monthly for her two children.

At the event next weekend, one company that makes the vehicles, Mobility Works, will bring a handicap accessible van to demonstrate how the technology could work to make Sabina’s life easier.

Tickets for the Sabina’s Wheelchair Van Fund comedy night are available for purchase for $25 by calling 401-742-0502 or emailing Sabinasvanfund@gmail.com.

Those who cannot attend but wish to donate can do so at www.gofundme.com/piorkowskiwheelchairvan .