By Sarah Kuper
On April 22, a little girl will have a lemonade stand in her Vestavia Hills yard.
But this won’t be your average lemonade stand, just like 4-year-old Luisa Morlandt isn’t your average little girl.
Diagnosed a few months shy of her second birthday, Luisa has Rett Syndrome. Her lemonade stand, which will include games for kids and offer arts and goods for sale, is raising money for research into her disease.
Luisa’s parents, Tony and Sarah, know many are not at all familiar with this rare syndrome, so they describe it as best they can.
“It’s a rare neurological disease that primarily affects girls,” said Sarah Morlandt. “After a period of normal development, girls with Rett Syndrome regress, losing learned verbal and gross motor skills and purposeful hand movement.”
Rett Syndrome is a lifelong disability that typically requires 24-hour care for the rest of the child’s life.
While Luisa has cognitive abilities, she doesn’t speak or walk. She attends Cahaba Heights Elementary and is able to communicate using eye-gaze technology and responding to yes or no questions.
The Morlandts said that, while they never saw Luisa’s diagnosis coming, a few things fell into place once they knew.
“Birmingham has one of the top Rett Syndrome research centers in the nation. We had no idea when we moved here before Luisa was even born. Plus there are two foundations locally,” Tony Morlandt said.
The Suki Foundation is a non-profit created in honor of another girl, Sarah Katherine Bateh, who has RS. The foundation works to spread awareness, increase quality of life and fund research.
The Southeastern Rett Syndrome Alliance, based in Trussville, is a grassroots organization that, among many other things, helps connect families dealing with the struggles of Rett Syndrome.
The “Lemonade for Luisa” fundraiser will raise money for Rettsyndrome.org, an international foundation.
Morlandt said the work these organizations do is vital to taking care of a loved one with RS.
“For every family, it is an individual journey,” he said. “This is the plan the Lord has for us and it isn’t all good, but it isn’t all bad either. We love our girl. We want to do what is best, but it can take more than what one family can do.”
Morlandt is frank when he says much of his family’s life is taking care of Luisa.
“We aren’t involved in much. When we are home it is all about the kids. Things take us longer as a family,” he said. “Traveling is a major endeavor. Luisa doesn’t enjoy theme parks or airplanes and she doesn’t handle large crowds either.”
But, he said he feels his family is stronger for it.
“One thing having a child with special needs will teach you is the importance of having priorities and values straight as a family. I notice my big kids are very caring and considerate of siblings. We find a lot of beauty in simple things like hanging out in the backyard. Our family looks a little different than most but we have a great support system and neighborhood.”
Morlandt counts Luisa’s doctor, Alan Percy, as an important member of that support system.
Percy recently was named the first recipient of the Rett Syndrome endowed professorship at UAB, made possible by the Suki Foundation, UAB and Children’s of Alabama.
Percy diagnosed the first confirmed case of RS in the United States in 1983.
He also established a neurology clinic that serves Children’s patients with diseases including RS.
Researchers have identified the gene causing Rett Syndrome in lab mice. That study demonstrated the potential reversibility of Rett Syndrome.
Morlandt said this study is one reason RS is thought to be a curable disease.
“You know Mark Zuckerberg donated 3 billion dollars to curing diseases and one of those initiatives is Rett Syndrome. It has the greatest potential to cure many neurological diseases,” Morlandt said.
He said finding a cure to RS could bring researchers closer to finding cures for other diseases as well, such as Alzheimer’s, autism, schizophrenia and Parkinson’s.
There have been a few clinical trials in humans, Morlandt said, but Luisa was not eligible because of her age.
By raising money through the lemonade stand, Morlandt hopes to see more clinical trials for Luisa’s age group.
While there will be lemonade at the fundraiser, the event also includes bouncy houses for kids and a new feature called Luisa’s Market.
This year, the Morlandts have reached out to local artists and crafts-makers to donate items to the event. Attendees will be able to buy original art or goods or win items in raffles.
The family hopes people will come out to help fund research but also to meet Luisa.
“We want people to see her face and how pretty she is. Her smile can light up someone’s day,” Morlandt said.
Lemonade for Luisa will be at the Morlandts’ home at 3969 River View Drive in Vestavia Hills.
Lemonade for Luisa T-shirts are available at bonfire.com.
For more information on Rett Syndrome or to make a direct donation, visit rettsyndrome.org.