Can you believe it? Northeast Ohio Parent celebrates our 100th print issue this month. The editorial staff has featured several Northeast Ohio families and children since our first issue in 2014. We decided to pick a few to follow up with, but it was difficult as there are many wonderful stories we’ve covered in the region. We want to thank everyone who was willing to share their stories, advice and lend a hand in making the magazine adorable in and outside the pages.
Bundle of Joy, DECEMBER 2015
The holiday season is always a special time for parents. Northeast Ohio Parent staff hoped to bring some joy to readers.
Kim Stahnke of Kim Stahnke Photography has done many Northeast Ohio Parent cover photo shoots and recalls the session of a sleeping baby, Sawyer Skubak, who was four months old at the time.
“We spent about two hours getting this little guy to sleep and got two photo options and that was it,” Stahnke says. “Ashley Skubak, his mom, and I took turns walking him around the studio trying to rock him to sleep. She even took him on a drive in the car but every time we laid him down he woke up until the very last time in which case we got the two photo options.”
The December cover won a national gold award at the 2017 Parent Media Association Design & Editorial Awards.
Ashley Skubak says Sawyer, who is now 7, loves to tell visitors that the baby in the picture is actually him.
“And it is a fun story for him to hear and share with others all these years later,” she says. “Sawyer’s great grandpa was so proud. He got so many copies and gave them to everyone he knew. Sawyer was the first great grandchild, so it was a very special memory to share with his great grandpa (they had an amazing connection, even when he was a little baby).”
She says Sawyer is smart, funny, sensitive, and a great big brother to his two siblings, Sidney, 4, and Sloane, 2.
“He plays baseball and soccer, as well as the piano/keyboard,” she says. “He will be starting first grade in August. He made so many great new friends last year and is excited to go back and see everyone. He enjoys playing video games, currently obsessed with Zelda. He also likes reading Zelda books, as well as the Harry Potter series. He learned how to ride a bike (no training wheels) this summer, too. He is a sweet kid who thinks of others and just tries to have fun.”
Home Spun Halloween, OCTOBER 2016
Brooklyn Wells, 1, the 2015 Cover Kids winner, stole our hearts and was chosen to grace the cover in a homemade, lion tutu costume from an Etsy shop. Brooklyn’s mom Jennifer Wells says they still have it. She was a happy toddler throughout the cover shoot with photographer Kim Stahnke and made it fun and easy to get the perfect Halloween look.
Brooklyn, who is now age 7, has had many costumes over the years.
“Since the homemade costume cover, Brooklyn has been a strawberry, a rainbow, Dorothy from the “WizardofOz,” a unicorn princess, and a super hero girl,”Jennifer Wells says.“With Brooklyn’s Dorothy costume, she decorated a tin can to represent the Tin Man and she was able to collect her candy when she went trick-or-treating. Now as Brooklyn gets older, I let her choose her own costume, but we try to make it personalized so that her costume is one-of-a-kind.”
Her mom says the family was so excited to see Brooklyn on the cover.
“Brooklyn looked so happy and they loved her little smile,” Wells says. “My husband and I were so excited to see our little girl on the cover of the magazine. We went to every library in Akron to get enough copies to share with our family and friends.
As Brooklyn has gotten older, she keeps a copy of her magazine on her bookshelf in her room. She says, ‘she cannot believe she was on the cover of a magazine, this is so awesome.’”
Sense of Belonging, NOVEMBER 2017
Northeast Ohio Parent was introduced to the Belles family, and freelance writer Michelle Dickstein captured the work of parents Amy and Jeff Belles. They were inspired by their son Carson, who has autism, to help the community provide sensory-friendly and inclusive experiences for people with special needs. Over the years, they have worked with KultureCity, a national nonprofit, to make those connections around Northeast Ohio.
“So much has changed since 2017, sometimes it is hard to keep up in the bestpossibleway,”AmyBellessays. “There are now over 40 venues in Ohio that are certified KultureCity sensory inclusive, stretching from Akron to Cleveland to Canton and Columbus.”
When we did the photo shoot with photographer Kim Stahnke at the Akron Zoo, we featured their sensory spaces and sensory bags through their collaboration with KultureCity and the Belles. Carson, 12 at the time, was featured on the cover and in photos, along with his family, to show us some of the sensory spaces.
Carson is now 17 and his parents Jeff and Amy says he is doing great. “He loves school and being a part of his community,” Amy Belles says. “He loves riding his scooter, hiking, going to the beach and his family. It was a wonderful feeling seeing Carson on the cover of Northeast Ohio Par- ent Magazine, knowing he is valued and celebrated for exactly who he is.” To learn more about KultureCity and the Belles family work, visit kulturecity.org
Fighting for Jett, MAY 2019
When we met the Burke family of Kent, they were in the middle of adopting 22-month-old Jett.
Jett, who has multiple sulfatase deficiency (MSD), a rare genetic disorder, which leads to loss of motor skills, speech, neurological function, difficulty eating and swallowing. With no cure, symptoms will gradually get worse.
“Jett started to experience some disease-related regression during COVID,” his mom Amanda Burke says. “This last year has been really hard on him. He can no longer walk independently, isn’t able to form words, and becomes fatigued quicker. Through it all, though, he is the happiest, most pleasant kid to be around. He has not lost his spunk, spark, smile, or sense of humor. His life expectancy was 2 to 4 years. This year he turned 5 and we hope to enroll him in home-based kindergarten. A milestone we never imagined he would be able to reach. This is all due to the dedication of his home nurses, his specialists, therapists, his personal drive, and some even say just from pure love from those all around him.”
However, COVID had been difficult for the family and they had to do therapy virtually.
“Doing physical therapy in person is far more valuable,” Burke says. “His therapist worked so hard to keep him engaged, keep our spirits up, and to teach us as best they could virtually. On the positive side, because people were masking, out less, and stores were sanitizing more, he didn’t get sick at all during COVID until the mask mandate was lifted. We also had the chance to spend more quality time with him and his sisters since we were all home.”
Amanda and Vanessa Burke are still fighting for Jett, in fact, Amanda Burke serves as the current president for the Board of Directors of the United MSD Foundation.
“While there is still no publicly available treatment for MSD, the data from the gene replacement therapy work that has been taking place for years was finalized this year,” Amanda Burke says. “Those data proved the efficacy of this treatment option in slowing disease progression. This treatment will save the lives of children with MSD. The United MSD Foundation just announced their “30 Who Cure” campaign. Jett has played his part in changing the world and helping to get this clinical trial moving forward by donating urine to the Mayo Clinic to help confirm MSD diagnosis for other children. He has also given urine and blood to help scientists understand more about the disease from a biological level. We are fortunate to get to speak directly with these researchers and see how much they care about the children living with this disease. We can’t predict how much time we have left with our boy, but we know for certainty his life has impacted the future for other children born with MSD. Because of Jett’s mere existence families down the road will one day hear ‘there is a treatment’ not the message we received ‘there is nothing you can do.”’
To learn more, visit curemsd.org or follow their Instagram or Facebook accounts. You can follow Jett’s personal experience on Facebook, Instagram, and TikTok @ReadySetSaveJett