Written by: Neal Patten Unified Newspaper Group
When Makayla Schmidt began waking up her parents at night crying and disoriented in October 2017, they thought she was just having night terrors.
It turned out the Fitchburg resident was having grand mal seizures during the night. Schmidt started taking epilepsy medicine to remedy that, but in January 2018, she began having them during the day.
That was “shocking and scary” said her mom, Angela, because it meant Makayla’s medication wasn’t working the way it should.
Then began many hospital trips, MRIs and EKGs. Makayla underwent surgery where sensors were planted deep in her brain to find the source of the seizures. It turned out she had multiple tumors.
Makayla was diagnosed with Tuberous Sclerosis, a rare genetic disorder that leads to the growth of non-cancerous tumors throughout her body and will continue to do so throughout her life.
While the tumors began in her brain, there’s a chance they might reach other organs her mother said – including her heart and lungs.
“She has a tough road ahead of her,” Angela said.
Makayla’s restless nights should now be more comfortable, as she was gifted the bedroom of her dreams on Saturday, Jan. 11.
Seeking a source of comfort for her daughter, Angela reached out to Designing Dreams, a Beaver Dam-based charity organization with a mission to “inspire hope and happiness in the lives of children with cancer and cancer-like conditions by making their dream bedroom a reality,” according to its Facebook page.
After Angela discovered the organization, she filled out a brief application form on their website to nominate her daughter.
Angela said they found out Makayla had been selected for a bedroom makeover in September.
“Just to be selected gave her hope and happy thoughts, just from being selected alone, the positivity started right away,” Angela said.
Lead planner and decorator from Designing Dreams Mardel Curwick came to the Schmidts’ home and interviewed Makayla to find out what she would like in her dream bedroom. They then did all the makeover planning behind the scenes for several months.
Designing Dreams began the makeover on Monday, Jan. 6, and were ready for the big reveal on Saturday, Jan. 11.
The new room had a custom-made bed, a crystal chandelier (her favorite feature of the new room), a large vanity mirror set with remote control color-changing lighting and a walk-in closet. Schmidt’s favorite colors – pastel red and teal – were integrated into every aspect of the redesign from the wall paint to an armchair.
Every drawer and cupboard in the room was filled with gifts and accessories including coloring books, makeup kits, Makayla’s favorite gum and an instant camera she had been wanting for a long time, complete with several extra rolls of film.
The Tuberous Sclerosis diagnosis led to Makayla no longer being able to do many of the physical activities she enjoys, including swimming, biking, volleyball, climbing on monkey bars, sledding and skiing – any activity where if she lost muscle control, she would risk injury.
“I couldn’t do gymnastics anymore, which is very hard for me, because I have loved gymnastics since I was a little girl,” Makayla said.
In March 2019, Makayla underwent a major brain surgery at American Family Children’s Hospital, where doctors operated on the largest lesion with a laser. Angela said Makayla is doing much better and has gotten control of her epileptic seizures.
It’s a cause for celebration, Angela said, because Makayla can resume some of the things she had been missing out on.
Makayla was finally cleared by her doctors to start becoming more physically active again, with supervision. Makayla said being unable to ski was probably the hardest sacrifice for her, as she has dreams of becoming a professional skier.
Prior to the surgery, school, Makayla couldn’t go on the playground during recess because there’s not enough adult supervision. She wasn’t able to participate in summer rec programs, had been limited in gym class and used a buddy system when walking in the hallways. RCI staff were trained on how to handle seizures.
Angela said Makayla couldn’t sleep or shower without her mom nearby.
“I don’t think a lot of people understand what risk factors are involved with grand mal seizures, like she can’t take a bath, I would have to be watching her every second,” Angela said. “This loss of privacy for a kid entering adolescence, never being able to be alone, that’s big deal.”
Since the surgery, Makayla has been taking skiing trips with the school – with her dad coming along to supervise – and has also been able to do gymnastics again.
Makayla is optimistic about her future. On the day of her dream bedroom reveal, she wore a shirt emblazoned with, “anything is possible,” a mantra she believes to be true.
“As a parent, we want any little glimmer of happiness in her life,” Angela said.