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FALCONER – Family of a three-month-old diagnosed with a very rare genetic disease are cherishing precious moments with their daughter, after she was given 12 to 24 months to live.
After suffering her first seizure earlier this year, baby Scarlett Bush was diagnosed with Zellweger syndrome, known as ZS, a genetic disorder found in newborns that severely impacts her nerves and metabolism.
For her parents, Erica Webster and Dane Bush, their initial reaction to the diagnosis was shock.
“My mom is in special education, she can help us and we can have therapy. Whatever it takes to get her through this. Well, then the next day they tell us that we don’t even get to keep her. It was just devastating, it really was. At first I just stared at the wall, I couldn’t even believe what they were telling me,” said Scarlett’s mother, Erica Webster.
The disease itself is very rare, and because of this, there is little known about it. This condition causes poor muscle tone, seizures, and a shortened life expectancy among other disorders.
“Scarlett has a very rare genetic condition, the genetic condition pinpointed that she has is D-bifunctional protein deficiency,” said Webster. “And she also has, because of the Zellweger and the mutations, she has polymicrogyria or PMG, and that’s where the folds in her brain, they developed too small and too many of them.”
While the family is making every second together count with baby Scarlett, known to her loved ones as Letti, the community is also stepping up to help.
“The support from people who have no clue what’s going on just blows my whole mind. I’ll never be able to say thank you enough for just the outpouring of love for her. That’s all I want. When we learned of her diagnosis, that we weren’t gonna be able to keep her, I just wanted everyone to know her, and love her, and eventually just remember that she was here,” said Webster.
So far a GoFundMe to help cover medical expenses for the baby has raised nearly $7,000.
“It’s surreal, it really is,” said Scarlett’s mother, Erica Webster.
“There’s been a lot of generosity and people that have reached out, people we don’t even know,” said Scarlett’s father, Dane Bush.
“It’s amazing,” Webster said.
Saturday at the Falconer Rod and Gun, a benefit to support her family will also take place, featuring live music, various performances, a kid zone and food and drink.
To learn more about the charitable event, check out the “Love 4 Letti” Facebook page.
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