Young Girl With Sanfilippo Syndrome Receives Her Dream Make-A-Wish Gift, a Hot Tub

3-year-old Rowan Begbie, who has Sanfilippo syndrome, recently got her heart’s desire thanks to the Make-A-Wish Foundation. Her wish? A hot tub.

Girl with Sanfilippo Syndrome Gets Biggest Wish Granted

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Rowan’s genetic condition is extremely rare and affects the brain and central nervous system.

The little girl loves water, so the foundation fulfilled her wish by installing a hot tub in her backyard in Tennessee.

She Needed a Place to Do The Thing She Loves

“She really just needed a place — a respite — every day for her to just do the thing she loves. And that’s being in the water,” Rowan’s father said.

Rowan has many doctor's appointments, and she enjoys having her own place to wind down.

“She’s already spent so much time in it and is gonna love it so much,” her mom said.

She Was Diagnosed at Age Two

Rowan was diagnosed with the syndrome at age 2, when someone told the Begbies that they should have Rowan get genetic testing.

"If we hadn't gotten that call, we could've gone years without knowing," Rowan's dad said. "Awareness is everything."

Rowan’s Rough Journey

“She’s just a really sweet kid, and [they’re] a great family going through a tough medical journey. And a wish is an opportunity to give hope and joy to a child who’s in the middle of that struggle and give them something to look forward to and celebrate them being a child,” said Garrett Wagley, president and CEO of Make-A-Wish East Tennessee.

Rowan is currently in a clinical trial at UNC Chapel Hill, which is 12 hours from the Begbies’ home. She attends weekly treatment.

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Family Has Hope for Treatment

"[Rowan gets] an infusion of the enzyme she’s lacking. That particular enzyme is necessary to remove waste in the human body,” Rowan’s mom explained. “Over time, those wastes cause progressive neurological damage. Sanfilippo is often characterized as children’s Alzheimer’s. Kids eventually lose the ability to talk, walk, and feed themselves. We hope this trial helps slow the progression and gives her a better quality of life."

She added, "This rare disease is heartbreaking, and we hope someday there is an approved treatment or even a cure."

The Begbies are advocating for FDA approval for new treatments for this disease.

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The family also has a foundation called Rally for Rowan, which supports “families impacted by Sanfilippo syndrome through community engagement, charitable programs, and funding medical research.”

It’s truly wonderful that the Make-A-Wish Foundation knows that no wish is too big or too small. With all of the treatments and doctor's visits Rowan has, she certainly deserves a place to relax! 

WATCH: Young Girl With Sanfilippo Syndrome Receives Her Dream Make-a-Wish Gift, a Hot Tub

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h/t: People

Featured Image Credit: YouTube/WATE 6 On Your Side

Michaela Gordoni is an avid reader and part-time globe-trotter. With a bachelor's degree in International Relations and experience in the non-profit world, she has a passion for people and reporting. You can check out her portfolio here.