Barrington residents plan fund-raiser for 3-year-old girl

July 22 event in Warren will raise money for Cystinosis Research Foundation

Posted 7/18/18

Lily Beauregard wants to talk about the octopus outside on her front porch. Or maybe it was a ghost. 

Three-year-old Lily said there was a loud bang, and then she looked outside, but was not …

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Barrington residents plan fund-raiser for 3-year-old girl

July 22 event in Warren will raise money for Cystinosis Research Foundation

Posted

Lily Beauregard wants to talk about the octopus outside on her front porch. Or maybe it was a ghost. 

Three-year-old Lily said there was a loud bang, and then she looked outside, but was not sure what she saw. It could have been an octopus or a ghost or a monster, she says, almost convincing the adults who have gathered around her to listen to the story.

Or maybe it was the hanging plant. Yes, that was it, she says, cracking a smile. 

Most days, Lily is quick to share smiles and tell stories. She will give tours of her play-pretend kitchen that stands in the corner of her family's living room, or show off her finger-painting pictures that cover most of the refrigerator. 

Most days, it is almost easy to forget that little Lily Beauregard, who lives in Swansea, Mass., is battling a rare metabolic disease called cystinosis. The disease damages her organs, weakens her muscles, and has no known cure. 

Barrington resident Jane Wallis works as Lily's caretaker, helping lighten the load a bit for Lily's parents, Kevin and Courtney Beauregard.

A few days each week, Ms. Wallis makes sure Lily takes her medications on schedule. There are eyedrops she must put in every hour, pills she must take early in the day, and plenty more. Last Wednesday, Lily's nausea was bad, so Ms. Wallis helped her little friend take some special medicine to calm her stomach. 

Lily's medicine covers half of the kitchen countertop.

"All day long we're taking medicines," says Ms. Wallis. "But Lily's very good about taking her medicine."

Ms. Wallis and her husband, Tom, are continually impressed with Lily's strength. 

Recently, Mr. Wallis, whose family owned and operated Wallis Seafood in Barrington for 50 years, decided to plan a fund-raiser that will benefit the Cystinosis Research Foundation. 

The event, which features live music from the Grateful Dead tribute band Violin River, is set for Sunday, July 22, from 2 to 6 p.m. at the East Warren Rod and Gun Club. Tickets are $10.

"I've been thinking about doing this for a while," says Mr. Wallis. "I've set a modest goal of (raising) $2,000."

Lily says she is going to the "party," too.

"After my nap," she adds.

'An angel'

Ms. Wallis has been helping take care of Lily since she was diagnosed with cystinosis more than two years ago.

She says that most days, people meeting Lily for the first time might not know she is struggling with the disease. Lily is upbeat and busy, moving from the pile of stuffed animals on the sofa to her closet full of princess dresses, and then back to the sofa to play with her kitty, Simba. 

And she loves to talk.

"When I was a baby I used to not be a talker," says Lily. Then she's off to pick up her toy parakeet. She fiddles with the button on the bottom of the bird until the plastic pet whistles. Lily starts to smile.

Ms. Wallis says that she believes Lily is an angel who is here to help cure cystinosis — Lily is so good about taking her medicines, so strong during her doctor's visits and hospital stays. She barely squeaks when she has to give blood. 

"She is so strong," said Ms. Wallis.

The disease leaves most children undersized and constantly thirsty. Ms. Wallis makes sure that Lily is never too far from her sippy cup. She loves apple juice and macaroni and cheese. Her favorite dessert is ice cream — either strawberry or chocolate. She loves watching the Incredibles and enjoys reading Elmo books. Her favorite toys are her stuffed animals, including a small pink sloth.

Sometimes she will play pretend, giving her stuffed animals their "medicine."

Mr. and Ms. Wallis hope that people attend the July 22 fund-raiser. They know that every dollar raised and donated to the Cystinosis Research Foundation might bring doctors one step closer to finding a cure for the disease. 

More about cystinosis

Cystinosis is a rare metabolic disease that afflicts about 500 children and young adults in the U.S., and about 2,000 people worldwide. In the most common type of cystinosis, the earliest symptom include excessive thirst and urination, and failure to thrive. Children often appear pale, thin and have short stature. The abnormally high loss of phosphorous in the urine leads to rickets. After one year of age, cystine crystals appear in the cornea and cause severe sensitivity to light. In time, patients can develop problems such as hypothyroidism, severe muscle weakness and central nervous system complications. Without treatment, the disease can progress to end-stage renal failure by an average of nine years old. Today, patients can receive renal dialysis or transplants, but even with successful transplantation, they develop abnormalities in other organs.

— This information is from the Cystinosis Research Foundation

Special fund-raiser is in Warren

• What: Fund-raiser for Cystinosis Research Foundation

• When: Sunday, July 22, from 2 to 6 p.m.

• Where: East Warren Rod and Gun Club, 24 Long Lane, Warren

• Tickets: $20 for adults, children under 10 are free; tickets can be bought at the event

• Includes: Food provided by Market Street Pub and Grill; live music from Violin River; beer and wine cash bar

• Details: For more information write to thomaswallis@cox.net

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