The Daily Orange's December Giving Tuesday. Help the Daily Orange reach our goal of $25,000 this December
THE DAILY ORANGE

Her IMPACT

Maddy Hertweck, a 5 year old with cerebral palsy, is a part of Syracuse women’s lacrosse this season

L

IVERPOOL — As Maddy Hertweck was moved from her wheelchair into a car seat in her family’s van that’s fitted for a lift, she wanted to be like her sister. It was last summer and Maddy was in the backseat after one of her sister’s dance practices.

Maddy’s older siblings have no physical limitations. Lilia, 10, relishes her role as a defender on her soccer team. Caraline, 8, loves to dance. Maddy always watched, either in her walker or from her mother, Erin’s, lap. So on that ride, Maddy, whose smile usually lights up a room and whose sassiness evokes laughter out of anyone listening, spoke up.

“I want to dance like Caraline,” she said.

For the first time in her life, she could. When she was born, doctors said Maddy could be a “vegetable” her whole life, Erin said. They hadn’t known what was wrong, only that Maddy would have a disability. Years later, when Maddy was diagnosed with cerebral palsy and epilepsy, her family learned how to manage her condition — it became more routine. But in the car, Maddy saw the “physical limitations” that she wanted to overcome.



“For Maddy, she didn’t have her own thing,” Erin said.

a1_mollygibbs_pe-3

Molly Gibbs | Photo Editor

Through Team IMPACT, a nonprofit organization that pairs children with chronic illnesses and local collegiate programs, Maddy joined No. 3 Syracuse women’s lacrosse on National Signing Day on Jan. 25. Maddy spends two to three days a week with her 35 teammates and has gone to every home game. She’s a superstar to a team vying for a national title.

“Sometimes society looks down on people with disabilities,” Erin said, “so for (Syracuse) to say Maddy was a part of their team, their success for this season. It’s a huge honor as a mom.”

• • •

Hours after Syracuse defeated Duke on March 30, Maddy went toy-to-toy in the Hertweck’s Liverpool home with no walker or wheelchair. Erin joked that Maddy can’t stick to one toy for more than five minutes. First, it’s Play-Doh, “one of her favorites,” her father David said. She mashed blue dough into circles. Maddy then grabbed a toy screwdriver and carved shapes out while smiling.

The 5-year-old sat on her mom’s knee and Erin kept a hand on Maddy’s lower back. Maddy wouldn’t be able to play otherwise she’d fall onto the carpet of their living room.

a1_web_dom_mollygibbs_pe-1

Molly Gibbs | Photo Editor

Maddy was born at two pounds and one-and-a-half ounces. Erin developed preeclampsia, a condition of high blood pressure during pregnancy, and Maddy stayed at Crouse Hospital for three months. A large mass on the side of her brain led to an emergency cesarean section and subsequent premature birth.

“It was a lot of coming and going,” David said. “A lot of issues and how they would be resolved.”

“Or if they would be resolved,” Erin added.

They were told to be careful. Because of the severity of her condition, there was a “spectrum” of potential side effects, David said. Either Maddy would never communicate, or her disabilities would be minor.

Because of the mass, narrow pieces of tubing called “shunts” were implanted into Maddy’s brain. Hydrocephalus had made her head look like a “light bulb,” David said, and when her brain was finally drained it turned into a “pancake.” Maddy’s health improved. And one of the last remaining vestiges of her condition are the timed seizures that occur every two to three months.

 

“Sometimes society looks down on people with disabilities,” Erin said, “so for (Syracuse) to say Maddy was a part of their team, their success for this season. It’s a huge honor as a mom.”

 

At 5, she only sees a speech pathologist periodically. Her days consist of two-and-a-half hours of school five times a week, usually a nap after, some outpatient physical therapy mixed in with the occasional rock-climbing trip.

But the activity on Maddy’s mind on March 30 came to a close. Erin told her daughter to put her toys away. “You put them away,” Maddy said back. David and Erin feigned anger.

“Sassy is a great word for her,” Erin said. Maddy cut her off: “I’m sorry, Mommy.”

• • •

Last August, Erin stumbled upon a sponsored Team IMPACT post on Facebook. Without thinking much of it, Erin recapped Maddy’s situation on the company’s website. A few months later, a member of Team IMPACT reached out to her. “It happened pretty quickly,” Erin said. A woman asked if Maddy had a specific team in mind. She didn’t.

“Well, I have one team for you,” the lady on the phone said. “One who’s been calling me for months every week.”

a1_embed_ericblack

Eric Black | Senior Staff Writer

Following Syracuse’s worst season in program history, senior Julie Cross reached out to SU head coach Gary Gait about the possibility of hosting a child from Team IMPACT. Cross saw something similar at Maryland, Gait hesitated. He remembered getting close to Jack Tweedy in 2010, a 5-year-old adopted by SU’s men’s team. Two years into their relationship, Jack died.

“It took a long time to develop another one. You have somebody you have a relationship with, and it’s tough,” Gait said. “We just kind of stayed away from it awhile.”

Their first meeting was set for Dec. 19. Maddy’s locker was closest to the door, next to leading-scorer Emily Hawryschuk. SU’s campus had emptied during exams but a couple of players hung around. Cross greeted Maddy and her family. And as the players met Maddy and learned her story, some of the girls started crying, Cross said.

Maddy noticed something different about the lockers — her nameplate didn’t have a picture like everyone else’s.

“Instead of being like this is cool, she’s like ‘Where’s my picture?’” Erin said.

Maddy beamed on the ride home, but her access to the team was initially limited. Every meeting between Maddy and the team would have to be pre-planned. So, Maddy signed a letter of intent, allowing her access to each practice and she escorted the team during its home games.

a1_maddy_wlaxgame_tjshaw_sp

TJ Shaw | Staff Photographer

Erin’s prep for Maddy’s gameday experience begins a couple of days before. Assistant coach Caitlin Defliese coordinates coin tosses and where Maddy will be on the field, and Erin tries to explain to her daughter what may happen. Sometimes buzzers scare her, or she’ll get frantic during the National Anthem.

While the National Anthem played before SU’s game against Virginia, goalkeeper Asa Goldstock stood to the right of Maddy’s electric wheelchair. As the music started playing, she told Maddy to stay still, but Maddy grew flustered and Goldstock dropped to one knee. Seconds later, Cross, to her left, did the same.

Maddy quieted down and, as the music stopped, they walked her off the field. Sometimes, she tells Erin and David to scream “Go Maddy,” like she’s about to sub in.

“When we go onto the field, the biggest issue was telling her she wasn’t staying out there,” David said. “She literally thought she was literally out there.”

• • •

Despite her excitement, Erin couldn’t help but worry how her daughter would remember all of the player’s names. Now, Maddy scrolls through her phone, through every roster picture reciting each of her new friends. Maddy’s family Instagram, @amazinglymaddy, has even grown to over 1,500 followers.

a1_mollygibbs_pe-2

Molly Gibbs | Photo Editor

Lilia and Caraline want to be like their sister these days and plan to start lacrosse soon. David’s own competitive nature has gotten him invested in the team, he said. Erin’s noticed how excited her daughter gets when she brings up members of the team. Maddy seemingly mentions them in every conversation.

Before signing day and the relationships that followed, when Caraline first met the team, midfielder Vanessa Costantino challenged the 10-year-old to a dance off. Teammates huddled around them. Caraline’s dance background showed but Costantino won, Caraline said.

From the side, Maddy watched like she always has, smiling and goofing around. Costantino’s signature move, the dab, stuck with her, though. She could do that.

“Do the dab,” Caraline said to Maddy, egging her on months later in their living room, “do it with your leg like you always do.”

Maddy did it once. Then twice, and then over and over — as many times as she could.

CORRECTION: In a previous version of this post, Maddy’s name was misspelled in the excerpt. Her name is Maddy Hertweck. The Daily Orange regrets this error.