Bay Area father raising awareness after daughter diagnosed with rare disease
SARASOTA, Fla. - A Sarasota single dad of twins is hoping to spread awareness about a rare disease his 7-year-old daughter was diagnosed with.
Artie Phillips tries his best to take things one day at a time. His son, Kylo, was born with Ventricular Magali, which affects three ventricles in his brain.
"It’s quite large. It’s a 19 mm dilation. So, when you look at the x-rays, it looks like a butterfly," he said. "That causes spastic diplegia, cerebral palsy. He has a previous position of autism."
Kylo's twin, Bridgett, was diagnosed with Rett Syndrome before her second birthday. It's an extremely rare disease caused by a genetic mutation that impacts brain development. About one in 10,000 girls are diagnosed with it.
"You never know what symptoms you’re going to get. You have atypical, you have placid. There’s different forms, and she seems to have both," Phillips said. "At a year and a half, she stopped learning to walk and talk, feed herself unassisted."
Her symptoms also include seizures and frequent pneumonia.
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"She has to get suctioned quite often because she can’t go ‘ahem.’ She has to do breathing treatments every four hours," Phillips said. "We’ve been through 11 nurses now. We’ve had one that’s been really great. One that’s starting on Friday. There’s an emotional load they have to take on as well as some of them just didn’t do well."
Bridgett is also fed through a feeding tube every four hours.
"It’s a little bit of a sore spot because there’s little joys in life and that (eating) was one of them for her," Phillips said.
With the cost of nurse and specialist visits, medication, and equipment, the family of three have called a hotel room in Sarasota their temporary home.
"I have not been able to work for a while with all of her stuff I have to do. All of her doctors' appointments and everything," Phillips said.
Phillips is grateful to local videographer and friend Dylan Jon Wade Cox, who documented their journey through a ten-minute video in order to help them find more permanent housing.
"He’s been one of Bridgett’s biggest cheerleaders, and we couldn’t be more thankful," Phillips said.
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Cox filmed and edited "1 Day at a Time" in just a couple of hours.
"Yesterday (Tuesday), I came here and kind of just filmed a two-hour window of Artie and his family," Cox said, "It’s nice to think about ways to help with photography and videography."
Cox helped the family of three raise about $1,500.
"We’re hoping that on Thursday an HOA accepts our application because rent in Sarasota is hard because you have to have good or great credit, you have to make three times the amount," Phillips said.
To learn more about Rett Syndrome, click here.
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