Emilia’s story
Emilia’s granddaughter, Zoe, was diagnosed with a rare and debilitating disease called Niemann-Pick, type C in 2017. It was devastating to learn that the illness could eventually take away her sweet little granddaughter, but Emilia picked herself up and stepped in to support her daughter, Marie-Paul, and her family. Emilia soon became Zoe’s biggest advocate.
One of the challenges that Zoe faces is mobility so Marie-Paul needed a van with a lift to accommodate Zoe’s wheelchair. When Emilia learned about this, she immediately began fundraising; she hosted an afternoon of music and sold tickets to win gift baskets received from her community in Cap-Pélé.
When Zoe needed a feeding tube, Emilia spent three days in the hospital with her, just offering comfort and moral support. Emilia steps in and helps her daughter whenever she can, and treasures any time that she can get with Zoe; they spend every Sunday together.
Since Zoe was granted a wish through the Make a Wish Foundation in 2017, Emilia has also become more involved with the organization and participates in their fundraising walks.
Q&A
How did you feel when you first found out about Zoe’s illness?
I was heartbroken. The news was very hard on our whole family—we were all devastated. It took me a while to accept it, but then I decided that we would enjoy every day that she’s well. I don’t want to waste a minute feeling sorry for her or for us because time is precious.
Why did you get involved with the Make a Wish Foundation?
Zoe’s doctor referred her to the Make a Wish Foundation and she was granted a wish. I got involved because I wanted to be part of something that was going to bring joy to Zoe and so many others. We raised $1,300 through a fundraiser and participated in the walk with her.
Zoe wanted a horse, but since it wasn’t feasible for her parents, she decided to get a bedroom makeover instead. It was a very emotional time when the foundation granted her wish. She now has a very nice room to relax in with a lounge chair, big screen TV, new bed, desk, dolphin mural, and even a chandelier! It was wonderful to see her so happy. My son also organized a visit to a local stable so Zoe could visit a horse named Carter. She gets very excited when it’s time for her weekly visit with Carter.
How is Zoe doing now?
She’s one of the bravest little girls I’ve met. She’s a real trooper and never complains, even when she got her feeding tube put in. Her memory is still good and she continues to go to school, but she gets tired very easily and needs to go to bed early.
What advice would you give to families who have children with serious illnesses?
Be supportive and enjoy every moment you can with your family. Take every opportunity to make memories!