ORANGE, Ohio — A child’s spirit is what keeps the holiday season alive.
Kids have their wishes set, and their letters to Santa Claus stamped.
Liza Raddell told me she wants a “police man outfit with police stuff, a Barbie basketball person, and a Barbie whole giant dream house.” Liza’s two sisters, Emily and Ella, want clothes, white socks, and a weighted blanket.
The holidays can sometimes look a little different for the Raddell family, though.
“Liza and Emily both have a rare illness called Hurler syndrome, MPS1. Emily was diagnosed when she was just a couple months old, and then we knew she was going to have it. Both are life-challenging illnesses,” the girls’ mom, Ann Marie, said.
Hurler Syndrome MPS1 is a rare inherited disorder that can affect many parts of the body.
According to the Cleveland Clinic, it’s a condition where the body doesn’t have enough enzymes to break down sugar molecules. The condition causes skeletal/joint abnormalities, distinct facial characteristics, issues with cognitive development, heart and lung problems and an enlarged liver and spleen.
Ann Marie explained how the family is constantly on the go when it comes to doctor appointments and checkups, so when the holidays hit, they truly take it in and are grateful for each other.
“We are going to a conference in Orlando for their illness. It'll help us learn a little bit more. And then we are really looking forward to spending time together because [Emily] is having major, major spine surgery in January. Once that happens, we'll be a little more confined. We're just trying to enjoy the time together now while things are still a little calmer,” Ann Marie explained.
This family isn’t on their own, though. In their corner is A Special Wish Northeast Ohio.
“A special wish foundation grants wishes for children with life-threatening illnesses between birth and 21 years of age. We have kids wish for things like trips to Disney World, playgrounds in their backyard, hot tubs in their backyard, really whatever they can think of,” A Special Wish Northeast Ohio Executive Director Eileen Lane said.
A wish can cost upwards of $10,000, and individual donations are A Special Wish Northeast Ohio’s largest single source of funding.
The organization partnered up with Pinecrest to do something extra special as a way of fundraising this holiday season.
In the middle of Pinecrest sits a tree called The Wishing Tree. It’s decked out with lights and ornaments. Next to it is an ornament-style kiosk.
On the kiosk, a few prompts will pop up, including one where you’ll need to donate at least $1.
Once a donation is collected, The Wishing Tree will light up and play music.
“They get the power in their hands of lighting up that Christmas tree which is really cool,” Lane said.
Every 92 cents of each dollar donated will go directly towards making a child’s wish come true.
A Special Wish Northeast Ohio has made 200 wishes come true since opening its doors in 2013.
Lane said the organization currently has more than 500 families in their Sparkles of Joy program.
“[Our job] includes us bringing them food while they're inpatient in the hospital. We do that five days a week. Then when they're outpatient, we provide VIP experiences to places like the Lego Store, Dave and Buster's, Build a Bear, really anywhere a child wants to be a kid, we make it happen for them. It’s in a safe way because a majority of our kids are immunocompromised. They can't be around crowds, they can't be around germs and we just make that happen for them safely. We also do once a month family events. We get all of our wish families together and they get to experience something they wouldn't otherwise get to experience,” Lane explained.
Ann Marie described life-threatening illnesses as isolating, so having an organization like A Special Wish, as well as other families who understand what it’s like, makes a world of difference.
“It's amazing that people are willing to donate to A Special Wish for families like us,” she said. “It really does take a village and we have very helpful people in our lives including A Special Wish."
The Wishing Tree will remain up through the Christmas season.
If you can’t make it out to the tree but would like to donate, CLICK HERE.
