A Brighter Day
Dec 1, 2020 | Features | 0
Like many little girls, Luisa Morlandt loves bright colors, bubbles and butterflies. Most days when she comes home from school, Luisa goes straight to her room where she admires the neon glow of bubbles as they illuminate the walls—and the small paper butterflies that cast an imaginary flutter.
Sarah Morlandt, Luisa's mother, says it's these simple joys that make her daughter's day a little brighter. Because Luisa has Rett Syndrome, a rare neurological disease that affects less than 1,000 children in the U.S., she experiences the world around her in a different way. Rett Syndrome, Sarah explains, is a spontaneous genetic mutation that affects brain development in young girls. When Luisa started missing major motor milestones at 16 months, she began undergoing genetic testing to determine what was causing the delays. When she was 2 years old, she was diagnosed with the rare syndrome.
A couple years ago, Sarah and her family began looking into Make-A-Wish to see what could be done to add a little extra joy to Luisa's day-to-day life. "Luisa doesn't travel very well because of sensory issues, so we knew we wanted to do something for her that would be special just for her," Sarah says, "something she could enjoy and use through the years."
After meeting with the Make-A-Wish Alabama team—whose chapter is conveniently located in Vestavia Hills just as their family's home is—Luisa's family determined a sensory room would be the perfect gift to give their daughter.
Vestavia Hills resident Tracy Bennett Smith, president and CEO of Make-A-Wish Alabama, says she and her team of 15 staff members meet many children like Luisa every year. Since Make-A-Wish Alabama was founded in 2012, the organization has made more than 1,000 wishes come true for Alabama children with critical illnesses. Currently, 250 children are waiting for their wish to come true.
"We really feel like a wish can be a part of the medical treatment process because it brings hope and joy to the child, and it gives them something to look forward to," Tracy says. "And many times the kids who have wishes respond better to treatments and have less hospital stays."
Although Make-A-Wish is a national organization, each chapter operates as an independent non-profit. "What that means is we are led by a board of people who live in Alabama, the funds we raise serve Alabama children and our employees are all within the state," Tracy says. Together with a medical advisory team, regional advisory council, board of advisors and countless volunteers, Make-A-Wish Alabama is able to grant wishes for children with critical illnesses throughout the state. Organizing wishes into four main categories—"to have," "to be," "to meet" and "to go"—the non-profit works to give unique wishes specific to the children they serve.
The process of giving wishes, Tracy says, starts with determining if a child is medically eligible for a wish. Once eligibility is established, then Make-A-Wish Alabama is notified and a "wish discovery meeting" is scheduled. "That's when we really get to know the family and the child," Tracy says. "We ask exploratory questions like what the child likes to do, where they like to go, things they enjoy. Through those conversations, something usually bubbles up and they realize what they want their wish to be."
Once a wish is determined, the team goes into action. While some wishes are "rush wishes" (this happens when a child's heath is rapidly deteriorating), others may take up to a year or more to come to fruition. For Luisa, the Make-A-Wish Alabama team planned out her sensory room for more than a year—making sure it reflected all the things Luisa loved most.
"It's really become a big part of our day," Sarah says of the time Luisa, who is now 8 years old, spends in her sensory room. "She has her sensory room time every day when she gets home from school and that gives her the chance to calm down. We turn off all the lights and turn on the beautiful bubbles tubes and she just loves it. It's been an amazing thing that has really enhanced her quality of life."
Along with the bright colors and other sensory elements, Sarah says one detail of the room specifically tugs at her heartstrings. One of Luisa's former respite care nurses, Amanda King, painted a large portrait of a butterfly for Luisa's room. Pausing and admiring the artwork, Sarah says, always reminds her of the positivity that's possible when people come together for a common cause.
"I think life is so much more than survival. It's about thriving and having joy even when life is hard," Sarah says. "I think Make-A-Wish really comes alongside families and helps them find joy in otherwise difficult journeys and reminds us what life is all about. Luisa has brought a lot of that richness to our life. She's taught us how to look at people's spirit."
As the Make-A-Wish Alabama team continues to serve children throughout the state, Tracy says she looks forward to meeting and working with more families who are walking through similar journeys as Luisa's. While the work is a labor of love, Tracy says seeing the smiles on children's faces when they see their wish come true makes all the hard times worth it.
"It's our donors and volunteers who are making this happen," Tracy adds, "it's the community."
For more information on Make-A-Wish Alabama, visit alabama.wish.org.
A Simple (and Free!) Way You Can Help Make-A-Wish Alabama
Many non-profits, including Make-A-Wish Alabama, have been affected by the onset of COVID-19. While wishes that require travel or large gatherings are unavailable, the organization is still working with families to give wishes that don't put children at risk. A simple (and free) way to help Make-A-Wish continue its critical work in Alabama is by participating in "Donate For Wishes," an initiative spearheaded by America's Thrift Store.
Any time residents donate used house goods and clothes to any of the store's 20 Alabama locations, a portion of money is automatically given to Make-A-Wish Alabama. "If you can give a bag of stuff away, that truly can turn into wishes," Tracy says. If you're not comfortable visiting a location, you can schedule a free at-home pick-up or find a local bin to drop off donations. For more information on America's Thrift Store and its partnership with Make-A-Wish Alabama, visit americasthrift.com/donateforwishes.
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