‘He is going to move mountains’: Fond du Lac Down syndrome playgroup inspired by Malix
Posted on: May 26th, 2020
Melanie Steinert Fond du Lac Reporter
FOND DU LAC – Michelle Kulczewski was devastated when she was told her son would be denied health care in Wisconsin.
Malix Kulczewski, was born with Trisomy 21, the most common form of Down syndrome, and a heart condition. He needed a transplant, but his parents were told that due to his disability, the hospital was not going to satisfy his medical needs.
“My son was two and a half months of age when I sat across from a surgeon and he told me my son would not have a heart transplant because he had Trisomy 21,” said Michelle, of Fond du Lac. “The surgeon said … that due to Trisomy 21, and not being certain what the quality of life would be for him, they can’t put him on the transplant list.”
Michelle was left to wonder how the doctor could determine his quality of life at such a young age, she said.
Fortunately, Malix underwent open heart surgery, which helped his condition, but left his family worried about future health complications and the difficulties they or others could face.
Michelle, and her husband, Tom, are now seeking legislative changes in Wisconsin to prevent discrimination of organ transplants.
“Still, even in 2020, we have to advocate for our son,” Michelle said. “I would not change Malix for the world, but as parents we need to change the world’s perception of him and shout his worth and educate people on Down syndrome … Malix is no different than any other child, but (he) is limited in the world.”
Michelle wants to spread support for families who also understand what it’s like to have a family member with a disability.
“I was scared when I found out about Malix’s Down syndrome while pregnant,” she said. “I didn’t know much about it.”
Michelle now feels that Down syndrome enhances, rather than hampers, a family’s life.
“I have three older kids and I think Malix has changed them for the better,” she said. “They are more accepting and caring for others needs and concerns.”
After going to a retreat for mothers of kids with Down syndrome, Michelle sought local connections.
Michelle went to a networking playgroup in Milwaukee but couldn’t find anything closer to home, so she decided to start her own group: Moving Mountains Playgroup.
“I wanted to find other families in the area to connect and work together. I am fortunate to have an amazing support system of friends and family, but when you are with other parents who have a kid with Down syndrome, who has had to advocate for them and has walked in a similar journey, it’s a different relationship and those connections are beneficial,” Michelle said.
The group meets at the Fond du Lac Children’s Museum and is open to families who also have a member with Down syndrome.
When she approached the museum, it was happy to host.
“The people that I have worked with that have Down syndrome tend to have a level of understanding of people that we don’t see as often, a very caring understanding,” said Heather Sphatt, the museum’s education and outreach manager.
While the group has no members yet, outside of Michelle and Malix, they hope others will find it useful and begin stopping by once the museum reopens and the COVID-19 pandemic abateshttps://4308832b3adb783f24bfdf8c5babf975.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html
Michelle will continue to advocate and educate people about Down syndrome.
“As soon as Malix could walk he was running. He is going to move mountains one day. He already has,” Michelle said.
Tom Kulczewski writes a blog with updates about Malix and their family. To read it, visit malix.life.
Michelle has created a Facebook group called Mighty Mountain Movers for families wanting to join the playgroup. For more information about the playgroup, visit cmfdl.org or contact Michelle at firstname.lastname@example.org.