As a parent, there can be nothing more heartbreaking than discovering your child has a serious medical condition. There can also be nothing more comforting than discovering the immense love and support of those around you as you fight for your child’s quality of life.
A ‘special space’ now exists in the Ridge Road home of the Jacobson family. The North Royalton family was the recent recipient of a Special Spaces total room makeover for their 2-year-old toddler Mae, diagnosed with Williams syndrome and several serious health conditions.
Now with a focus on creating dream bedrooms for children battling cancer, the Cleveland nonprofit renovated Mae’s bedroom while still working to remodel the rooms of children with life-threatening illnesses. As an extra special treat, Special Spaces sent the Jacobson family to Great Wolf Lodge in Sandusky while crews spent time renovating Mae’s bedroom.
“Mae’s remodeled room matches her personality and outlook perfectly,” said mom Amber Jacobson.
“Their attention to detail really touched my heart. You can really tell it’s a labor of love,” Jacobson said. “It has a calming theme. They made sure their remodel was good for Mae’s sensory issues. They painted the walls a creamy white and there’re beautiful little rainbows on the walls and double beds for her and her 4-year-old sister Emma. They gave us new blinds and curtains, painted the closet and added organizational items, and even stocked the closet with games.”
Other additions were added as well to make Mae’s bedroom a place of warmth, joy and constant comfort as the 2-year-old visits doctors and downtown hospitals throughout the week.
Mae is just one of approximately 30,000 people in the United States to have Williams syndrome. Patients with the genetic and sporadic syndrome have heart, kidney, calcium and sight issues, along with developmental learning disabilities. Not all symptoms are as difficult – individuals with Williams syndrome have extremely endearing, “excessively social” personalities.
“She’s the light of love,” Amber said of her toddler. “She’s one of 30,000 people in the entire country to have Williams syndrome. For us, it was sporadic, not genetic, so you know you were hand-picked by God. It’s such a rarity, but it’s a blessing too to be hand-picked from God. You think this is the worst place you’ve ever been in, but it turns out to be the most beautiful.”
The Jacobson’s learned of Mae’s diagnosis when the toddler was just 10 months old. The couple has three other children: Gavin, 13, Emma, 4, and Hunter, 1.
“We could tell there was something different about her,” Amber noted about the weeks following Mae’s birth. “There was failure to thrive. She wouldn’t breastfeed or take formula and the big shift came when she went from wearing six-to-nine-month clothing to zero-to-three-month clothing.”
Amber, whose work background includes time as a pediatric blood tech, insisted Mae’s pediatrician run a complete metabolic panel. Lab results shocked doctors. Mae’s calcium came back at a record high level and a specialist was flown in from Thailand to combat her calcium build-up. Since then, it’s been weekly, if not daily doctor and hospital visits – a new normal.
Just four weeks after the Jacobson’s learned of Mae’s health condition, their world came crashing down again when Amber’s father died of cancer. In months to come, she would also lose her uncle and grandmother.
To help her cope with her overwhelming emotions, a friend gave Amber an essay written in 1987 by Sesame Street writer Emily Perl Kingsley, “Welcome to Holland.” In it, the author writes of finding beauty in the unexpected places we find ourselves in.
“Mae has given me a new appreciation for what true, unconditional love is. She is pure love. You can just tell when you’re holding her,” Amber said. “It’s made me be more patient and given me a whole new direction. I want to start a nonprofit for parents of children with disabilities. I want to be that powerhouse. Mae helps me stop and appreciate life a little more. It all makes me stop and go, ‘wow.’ This little girl is so resilient. She doesn’t have a care in the world. She is so kind to everybody. We should all be more like her.”

By SARA MACHO HILL
Contributing Writer