Just like most other three-year-olds, Lia loves to play outside on her swing set. But for Lia, this is more than just some backyard fun – it is a symbol of her growing strength.
Lia is diagnosed with a neurodegenerative disorder called BPAN, which stands for beta-propeller protein-associated neurodegeneration. Because of this condition, Lia experiences developmental delays, including not having the ability to talk.
“She was diagnosed with a genetic test last November,” Lia’s mom said. “This is a newly diagnosed disorder. [Doctors] didn’t find out what it was until 2012.”
To help her cope with the effects of the disorder, a physical therapist, occupational therapist and speech therapist visit Lia every week.
“It was her speech therapist at the hospital who asked if she could refer Lia to Make-A-Wish,” Lia’s mom said. “At that point, I didn’t know who exactly Make-A-Wish was for.”
It was a pleasant surprise when Lia’s parents found out that she was eligible.
When it came to deciding what Lia’s wish would be, her parents knew that it had to be something unique to her. Although Lia is walking and doing well now, her strength will diminish with age.
“Because of her physical abilities, I wanted something that would help her in the long term,” Lia’s mom said. “If we can keep her as strong as we can over the years, the better off she will be.”
That is when they decided on a playset wish – something that Lia could enjoy every day, helping her develop her strength and improve her motor skills.
When watching her child’s wish come true, Lia’s mom said, “I felt really blessed that we were given this opportunity. This was something that we would not have otherwise gotten for her. So if it weren’t for Make-A-Wish, she wouldn’t have her play set.”
Since receiving her play set, Lia’s motor skills have improved, too.
“I got the playset with a ramp, which is easier than a ladder,” Lia’s mom said. “She struggled with it at first, but now she can get up the ramp all by herself.”
The possibilities for future improvement is what inspires not only Lia, but also her whole family.
According to a recent study published in Quality of Life Research, other wish kids have seen a similar impact of a wish. The study states, “From a motivational point of view, wish fulfillment can be seen as a motivator for coping and hope for the future,” (Shoshani 2015).
Each day Lia’s parents see the progress in her strength and the smile on her face, they are reminded of the true power of a wish.
“As a mom, I want to do everything in my power to help Lia learn, develop and be happy as she grows up with her rare disorder,” Lia’s mom said. “Make-A-Wish was able to help us do those things for Lia.”