'It's a space for her': Young girl with rare disorder gets sensory room of her dreams
BRISTOL, Wis. (CBS 58) -- Emily Perl Kingsley wrote a treasured poem called, "Welcome to Holland" for parents of children with disabilities. It equates the journey to a lifetime of planning a trip to Italy, only to find out you've landed in Holland. Not a bad place, just not where you intended to be. But through time, you see the beauty of Holland, and the people you meet along the way. We spoke with one such family from Bristol on the journey.
Lexi Aiken's a happy eight-year-old who loves her sister and her dog. But being able to run's a milestone not everyone like Lexi will have.
"Their gaits are usually pretty unsteady the ones who do walk. Some have normal gaits, and they run and run as fast as other kids but there are also kids who are wheelchair bound because of the hypotonia which is low muscle tone, said Carrie Howell, Dup15q Alliance Executive Director.
The Aiken family has had their share of ups and downs since Lexi was diagnosed with a rare genetic disorder known as Dup15q Syndrome.
"So, what comes along with that is epilepsy, autism, she's intellectually disabled and right? All of those things," said Briana Aiken, Lexi's mom.
Worldwide, there are some 2,200 "Dupers", that's short for Dup15q Syndrome. It's one of the leading causes of autism. Those who have it tend to have seizures, worst case, up to 100 seizures a day. Carrie Howell is with the Dup15q Alliance, providing support.
"A lot of our kids have infantile spasm which are seizures and the earlier the doctor can treat those with medications the safer it is on the brain, the more they may be able to acquire verbal skills that are equal to their peers," said Howell.
Howell says a proper diagnosis can get kids the physical and occupational therapy they need, leading to better outcomes while the brain's still developing. Lexi's mom, Briana Aiken, describes the early days when things just didn't seem right.
"She wasn't sitting. She wasn't holding her head up. She wasn't, I work in health care, so she wasn't doing any of the things that she should've been doing," said Aiken.
"It's things like the floppy baby who can't sit up yet. The baby who maybe isn't making the same milestones as kids their age," said Howell.
"At first her pediatrician just kept saying oh it's fine, it's fine and kept pushing it back and then but as parents we have to be advocates for our children and -17 so then eventually through like birth to three programs and things like that we went to some specialists and got some testing and then finally had some answers," said Aiken.
A startling diagnosis. Through advocacy groups like the Dup15q Alliance, their network grew.
"It just helps to have people knowing what you're going through really because if you don't have a special needs child you don't understand. And so, it's nice to have people who know what you're going through and to bounce idea off and vent and laugh and all those things," said Aiken.
Last year Lexi had brain surgery. Around that time, staff recommended Make-A-Wish Wisconsin.
"Her seizures just weren't getting better, back and forth to Children's Hospital, seeing her neurologist and seeing her geneticist and then just kind of talking about prognosis and how things just weren't going well and the geneticist was like 'hey can I recommend her for Make A Wish?', well yea but she's not gonna qualify, she doesn't have cancer, so I didn't even think it was a thing," said Aiken.
Make-A-Wish Wisconsin's celebrating 40 years this year. The wish granters started in Arizona for leukemia patient Chris Greicius. An announcer on a video from their Facebook page said, "On April 29, 1980, with the help of many public safety officers, that little 7-year-old boy's wish to be a police officer was fulfilled just four days before he passed away on May 2, 1980."
Chris Greicius' Mom said on the video, "You gave me strength, hope and joy because there were people that cared."
Make-A-Wish now has more than 60 chapters in the United States, including Wisconsin's.
"And all of a sudden we get a call from Make A Wish a couple weeks later, Lexi you qualified and what do you want to do? -136 that's kind of how that started," said Aiken.
Lexi's sitting in her wish, a makeover in the family home.
"It was just kind of that catch-all room and now it's become this space that is dedicated to Alexis so that she can enjoy it for years to come. A room like this is gonna really help her a lot in being able to play and grow and develop, communicate. It's colorful. It's got all things going on, so it just keeps her really engaged," said Forrest Doolen, Senior Director of Marketing and Communications for Make-A-Wish Wisconsin.
"She's really a home body and that's when we thought you know what a sensory room would be ideal because this is just her happy place and that's kind of how we came up with it," said Aiken.
With concern for her seizures, we couldn't be there for the excitement around the big unveil of Lexi's new sensory room, but these photos were provided by her family.
"You know it's cozy and comfy and she can relax but then she can get her crazy out on the trampoline too as you can see, she needs it sometimes (kiss) She definitely likes the reading bench. Although she's supposed to be sitting on it she really just likes to stomp on it and climb," said Aiken.
The average price tag of a wish is $8,000. Riley Construction volunteers helped make this one happen.
"To see the creativity of a crew that's normally following plans and specs is exciting to see, and they really put the passion of their craft into everything that they do. I am always thrilled to see the reveal and just to see the unfiltered joy of someone experiencing a wish being granted," said Chris Meier, Riley Construction Project Manager.
"All of the Link-a-Mole they all talk together and so it depends on the day. but she loves her Link-a-Moles and sloths are her absolute favorite. She loves sloths," said Aiken.
The sensory room is complete with colorful, interactive tiles, bubbling tank, large screen TV and more.
"So, we watch Moana and Bluey," said Aiken.
And one of Lexi's favorite activities now has a place indoors too.
"Do you want to see your trampoline? You jump so high you touch the sk. Say now I'll never get off of it," said Aiken.
"It's great. She has a space. It's a space for her. You know when we have company and she gets overwhelmed, it's a place where she can just go. We can close the door. We know number one that she's safe," said Aiken.