BREVARD COUNTY, Fla. – To know Emersyn is to love Emersyn.
She’s a bubble-loving 3-year-old who loves to smile even though she is battling a rare disease.
“It’s just very complicated. It led to at least 15 hospitalizations. Some have been three months long, some have been four months long,” said Emerson’s mom Delora Bury.
Emersyn’s rare genetic disorder is lysosomal storage disease with no name. Her mother said Emersyn is currently the only person living with the life-shortening disease.
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Despite the plethora of effects of her disease, including light sensitivity, being unable to regulate body temperature and more, Emersyn loves to go outside, which is why her family wants to make their backyard a place where Emersyn can enjoy the great outdoors.
“It’s a space we can bring her out. She loves being outdoors. Especially this time of year is really hard to go outside with her,” Bury said.
That’s why the Make-A-Wish Central and Northern Florida and the National Association of Women in Construction are partnering up to build Emersyn a backyard with sensory equipment so she can go outside and play safely,
“The first time I met her, when we were trying to discuss needs or what the project was going to be, you fall in love with her immediately. And Make-A-Wish is such a fantastic organization. It’s like how can you not get involved with this,” said Stacy Torres with NAWIC.
Torres said the project will cost around $20,000.
They’ve already raised a little over $11,000 and they’re hoping more members from the community can pitch in to help Emersyn.
“This is a hard situation as it is, and so to have any support, it is amazing,” Bury said.
The Make-A-Wish Central and Northern Florida has a donation page set up for just Emersyn on their website.
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