Fishtown community and Northern Liberties family spreading awareness about spinal muscular atrophy after loss of 1-year-old son
By Melissa Komar
William Jankowski was a super chill kid.
First-time parents Chris and Kelly welcomed him to the world on April 30, 2016, and life was uneventful for the first two months.
Kelly joined a breastfeeding support group at Minnow Lane in Fishtown when William was about 2 weeks old.
“I work in New York on most days, so before William was born, I never had close friends in the neighborhood or much of a Philadelphia network,” she said. “I was trying to breastfeed successfully and I found the group at Minnow Lane and that is what got me through my maternity leave. It’s incredible what Rebecca [Brett] has put together at Minnow Lane. To have this space where you could meet with other moms going through the same things as you was amazing.”
On most Tuesday mornings until William was about 18 weeks old, Jankowski would walk from their home in Northern Liberties for the weekly meetup.
“William was just this super chill kid, just watching everyone,” Jankowski said. “And he wouldn’t flail. He was super still and everyone would say, ‘he’s such a good nurser.’ ”
The Jankowskis continued their Tuesday routine at Minnow Lane and attending the weekly Music Monkey Jungle classes at the Northern Liberties Community Center, and William remained the “super low-key kid.”
And then, William went for his eight-week check-up, which Jankowski also described as uneventful until the end.
William’s pediatrician told the Jankowskis he wanted a senior pediatrician to do a consult on him.
“He was just a very happy kid who just didn’t roll over and didn’t lift his head up,” Jankowski said. “When we put him in tummy time, he wouldn’t flail about. He would just resign himself to tummy time and be very still. And he taught himself to fall asleep anytime he was in tummy time.”
At the time, the Jankowskis didn’t think much of his actions.
The senior pediatrician sent the Jankowskis to the neurology department at Children’s Hospital of Philadelphia.
Around 11 weeks, William was diagnosed with spinal muscular atrophy type 1.
“It basically means he was missing a little piece of gene that creates the protein that allows his spinal column to talk to his muscle,” Jankowski said. “So, he was a 100 percent alert, normally developing little kid who is still and observant. Over time, very quickly he lost the ability for his brain to tell his muscles what to do.”
Approximately one in 50 individuals are carriers of the autosomal recessive disease. Both parents must be a carrier of the disease for it to be passed on, which results in a one in four chance of the child being affected.
More than 50 percent of infants diagnosed with type 1 do not live until their first birthday, and more than 90 percent of infants diagnosed with type 1 do not live until their second birthday.
“For us as parents, what we learned immediately is that William’s mind was completely unaffected, but his body was going to not work,” Jankowski said, “so we started thinking immediately about how do you raise a child where he’s not going to look necessarily as competent as he is, and how do you find those adaptations in the world to help him experience the world.”
Part of helping William experience the world to the best of his ability included treatment.
Around the time William was diagnosed, Spinraza, an experimental SMA drug, was being tested through trials.
Although the Jankowskis were too late to start the trials, William was able to receive it through a compassionate access program in late October.
The drug is “an RNA drug that replaces a little bit of the missing protein,” and it kept William from declining so precipitously and allowed him to gain back movement in his arms and legs, according to Jankowski.
“He was definitely responding,” Jankowski said. “He went from only being able to move his hands a little bit, to being able to move his entire arm. He was able to turn his head a little bit and kick his feet a tiny bit. And William was able to be upright for hours a day in supported seats.”
In addition taking Spinraza, William underwent about two hours of medical treatment a day.
He wasn’t able to cough on his own, and the Jankowskis used a a cough assist machine two to four times a day and as needed to help him cough.
SMA also led to William’s inability to swallow, and the Jankowskis walked around with “a full, industrial suction machine at all times to help clear him out because William was prone to choking.”
William would use a nebulizer every morning. The Jankowskis spent about an hour every morning making sure his lungs were clear and he slept with a ventilator on.
And, he was fed completely through a feeding tube.
“We carried all that stuff with us when we went out, so we weren’t out as much when he was close to a year old,” Jankowski said, “but part of that was if he caught a cold of any kind, it was incredibly life-threatening to him. So, he couldn’t play in the same way that other kids do.”
Although the Jankowskis did see progress in William, specifically his ability to use his arms and legs again, after taking Spinraza, he passed away from complications related to SMA on May 4.
“William was getting a little stronger. My husband and I like to feel he was winning his SMA battle, but he certainly died from complications from SMA,” Jankowski said. “But in our minds, he was winning his SMA battle and just got a respiratory infection. He literally got a rhinovirus, a cold and he couldn’t, even with all the machines and help we had, keep his lungs clear. He was too weak.”
Amid all the medical treatment, the Jankowskis made it a point to keep William active, both at home and in the community.
“We have pictures of him at almost every bar and restaurant in Fishtown,” said Jankowski laughing. “We were very much of the mindset, if his life was going to be short, we wanted it to be interesting. We decided William should have a whole life.”
Martha and Fette Sau were common stops.
A few weeks before he died, the Jankowskis bundled up William and took him, along with all the medical equipment, and hung out at Evil Genius Brewery for three hours.
The Jankowskis would read to William for hours.
One of his favorite books was “The Adventures of Beekle: The Unimaginary Friend.”
Over the past few months, the Jankowskis have given out copies of the book inscribed with what became the William mantra: Don’t wait to go find your adventure.
“That, to me is part of who William is. He was just a terrific kid. He woke up happy every morning,” Jankowski said. “He had such a personality. And he had a short life, but he had a good life.”
William was not alone on his journey.
Local moms who met William through the breastfeeding support group at Minnow Lane followed his progress through Jankowski’s posts on Facebook.
Regardless of the significance, every milestone including William dying Easter eggs with assistance was cause for celebration.
Those moms included Brett, Katherine Scheponik and Kellie Mayrides.
Scheponik’s daughter was two weeks younger than William, and she was in awe of Jankowski’s confidence despite being a first-time mom as well.
“Even though she was only two weeks ahead of me into motherhood, she was so on top of things and so confident. She was basically my new mom mentor,” she said. “Everything that seemed daunting such as crossing Frankford Avenue with a stroller or breastfeeding in public, she did it with such ease.”
Jankowski was the one to initiate socializing outside of the breastfeeding support group, whether grabbing tacos at Heffe or coffee at La Colombe, and she was very open about William’s diagnosis, according to Scheponik.
Less than a year old, William’s demeanor gave no indication of the disease he had.
“William was the happiest kid in the group,” Scheponik said. “He was always smiling. He was such a good baby.”
Mayrides’ daughter was a month younger than William when she joined.
“It never occurred to me that William could pass away right after his first birthday,” Mayrides said. “It really hit home because my daughter was only a month younger and it could have been her. It could have been anyone’s child. I had never heard of spinal muscular atrophy before William was diagnosed.”
Mayrides remembers following William’s story on Facebook after he no longer attended the group.
“I remember seeing him going through trials with drugs and thinking that was good he was getting treatment,” she said. “And when we heard he had passed, it was devastating to a lot of us.”
Through Facebook conversations, Brett, Scheponik, Mayrides and other moms from the group brainstormed ways to show their support for the family.
Ultimately, the group decided to host a three-part series of fundraising events, “Shop, Spin and Sadhana for SMA.” Moms donated money and food, helped make flyers and posted on social media to raise awareness about the events.
Jankowski was overwhelmed when she learned about the events.
“There’s no way you can do any of this alone, and mine and my husband’s philosophy has always been to be very open because we want other kids to be healthy,” Jankowski said. “The response of the women in Fishtown who have been wonderful in making sure, whether I have a child with me or not, that I’m still part of their group of moms is incredibly important. It keeps a piece of William in my identity and it’s been incredibly meaningful to me. It’s an incredible community.”
Brett, one of the owners of Minnow Lane, hosted a fundraising event at the parenting business on Friday, July 7. Raffles for an Eco Sprout rocker were sold for $5 and 10 percent of all sales were donated. A total of $350 was raised, which will be donated to Cure SMA.
Scheponik is a certified yoga teacher, and although she hasn’t taught regularly in about a decade, she was a frequent participant in prenatal and mommy and me classes at Pacific Yoga, where she will be a guest instructor for the second fundraising event.
She chose to offer a yoga class because the practice is so centered on breath, a reflex people may take for granted, but is something that babies with spinal muscular atrophy struggle with.
“Yoga is gratitude, acceptance and positivity,” she said. “And because it is so centered on breath, we can realize what a gift it is to breathe and take some of our time and make a baby’s time on Earth better.”
Mayrides is an instructor at Ciclo and will instruct two 45-minute spin classes.
“We want these events to be a spotlight on a disease people don’t know about, and we want Kelly to feel support within the community,” she said. “There really is an extraordinary group of moms in this community.”
All proceeds from the spin and yoga classes will be donated to Cure SMA.
While the first series of fundraisers for Cure SMA in William’s name is not yet complete, turning the events into an annual memorial for William is an idea the moms are already discussing, according to Brett.
Creating a legacy for William, raising awareness about the disease and showing there is a support system for all parents in the community are what the group of moms hope to achieve.
“We really like being able to donate in William’s name to keep it out there in the community because he was a special boy,” she said. “And we really want Kelly and Chris to feel part of the community. This lets people know this is a strong community.”
Jankowski is grateful that community is sharing William’s story through the fundraisers.
“Awareness is so important. Early detection is incredibly important because kids shouldn’t have to deal with what William did. Parents shouldn’t have to deal with their kids not growing up,” Jankowski said. “If there is even one kid that gets diagnosed a little earlier than he or she would have, that will literally change that kid’s life.”
Two 45-minute spin classes will be held on Saturday, July 22, at 2 and 3 p.m. at Ciclo, 2036 Frankford Ave. Cost is $20 per person, per class. Healthy refreshments and snacks will be served after each class. Reserve a bike at StudioCiclo.com. Two yoga classes will be held on Saturday, Aug. 5, from 2 to 3:30 p.m. and 4:30 to 6 p.m. at Pacific Yoga, 2518 Cedar St. Suggested donation is $20. To reserve a spot, email email@example.com. All proceeds from both events will be donated to Cure SMA. For more information about spinal muscular atrophy, visit CureSMA.org.