(WKBN) — Six-year-old Sofia Angiuli is one of only 16 children in the world with what’s called Leukodystrophy and the only child with her gene mutation of the condition.
Since First News first spoke with her family, she’s had some changes to her condition and her family now needs help. A foundation called Go Shout Love has a way for you to pitch in.
Up until November, Sofia could stand and walk, but after three week-long hospital stays, her condition worsened.
“She’s lost the ability to walk, stand, sit up, hold her head up. She’s now fully non-verbal,” said Stephanie Kale, Sofia’s mother.
The Kale’s home is a two-story home with about stairs, which Sofia has to be carried up and down several times each day.
“In the beginning, Steph could carry her up but Sofia continues to grow,” said Rodney Kale, Sofia’s father.
“She’s basically like a 4 foot tall, 50-pound newborn as far as no ability, no trunk or head control,” said Stephanie.
Both Sofia’s bedroom and the bathroom are upstairs, and bath time has its own challenges.
“I don’t even wanna risk carrying her to her bed to dress her so I lay her on some towels on the bathroom floor — unfortunately next to a toilet — to dress her. I mean, this is just our reality right now,” said Stephanie.
It’s to the point that the family needs an addition to the home in order to care for her. The cost is incredibly high.
“Shockingly enough, we’re looking anywhere between $100,000 to $120,000,” said Rodney.
They’re looking for a contractor to do the work and there is no insurance coverage in an addition.
“We looked at moving. I mean, we’ve tried everything. This is literally the only option,” said Stephanie.
In a time that looked very dark, right when Sofia lost many of her abilities, the family got a phone call from a group called Go Shout Love.
“They’re a non-profit organization. They pick a different child with a rare disease each month and they rally for them. They sell shirts and different apparel on their shop,” said Stephanie. To donate or purchase a shirt, you can use this link: https://goshout.love/#shop-now
Sofia had been chosen, meaning all of February, anyone can go to their website and buy merchandise like T-shirts, and 85% of the profits go to Sofia and her family.
Each item reads “Known and Loved” with a koala bear which is a neat tie to Sofia.
“She gave the world’s tightest hugs. Arms, cheek to cheek, legs wrapped around and that’s what we called it — a koala hug,” said Rodney.
Stephanie said the community is already rallying around her.
“We’ve had a lot of support in the community with her school — she goes to Crestview Schools. A lot of the staff there bought shirts,” said Stephanie.