Monika's Sunshine DreamLift

A whirlwind adventure to The Magic Kingdom gave Monika the opportunity to discover what independence can mean
Sunshine Foundation

Making Lemonade

Friday, November 14, 2014

Monika

“Instead of being stuck with your parents all the time, it’s good to feel a little bit independent."

Monika lives with a disease people don’t always understand – Mucopolysaccharidosis Type 1 or MPS1.

“No one can understand unless you live with it,” says her mom, Mary. “It’s life-altering. The way I explain it is anything below her knee is a no, because she can’t reach down there. Monika is fifteen and she said, ‘Mom, I wish I could cook, but I can’t cook. The buttons to turn the stove on are at the back.’”

Despite the challenges, Monika and her mom face the disease with optimism. “I would say it’s hard for me to do some everyday things like change clothes,” says Monika, “but, I always find different ways to do something and it’s an imaginative way. Sometimes it’s hard to make social interactions, but I get through it.”Mary found out about the Sunshine DreamLift in Montreal from Monika’s nurse at Montreal Children’s Hospital. “Monika met a girl during her treatments at the hospital – Megan. The nurse actually suggested referring both to go together and that made it even more perfect.”
Monika

“I had never been away from my parents on a big trip like this,” says Monika. “Instead of being stuck with your parents all the time, it’s good to feel a little bit independent."

“The most wow experience was when we got into the gates at the Magic Kingdom and saw the Cinderella Castle – it was there and it was big.”

 
Monika and Megan made the most of their day, going on seven rides from Splash Mountain to Stitch’s Great Escape. “Even when we left Disney, me and Megan were so excited and there was so much we talked about. So many memories. It was just amazing.”Monika came home, excited to share her story.
 
Her mom came to the realization that her daughter can be independent. “I’m more comfortable letting her go now. A lot of times, parents think only we can do it. That’s not exactly true. Other people can do it and maybe they’re not their mom, but they can anyway.
 
“The way this disease has turned around our lives, she has handled it great. You know that saying when life gives you lemons, you make lemonade. Hers is very sweet. I admire her. She’s a very great person.”

 

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