Middleburg parents spread awareness about toddler's rare condition, Vein of Galen Malformation

JACKSONVILLE, Fla. — A Middleburg toddler with a rare and potentially life threatening condition is fighting for her life.

Phoebe was born happy and healthy on February 13, 2018.

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“She’s a very spunky baby,” said her mother, Mary Holder.

But at 9 months old, Phoebe had a seizure and her mom and dad rushed her to the hospital.

Phoebe was later diagnosed with a rare condition called Vein of Galen Malformation.

It’s a type of blood vessel abnormality in the brain.

Doctors told the Middleburg couple that if left untreated, the condition could be life threatening, so Phoebe underwent two surgeries to save her life. But after the third procedure, her parents noticed a big difference in their once spunky baby.

“She’s now on a feeding tube, she’s not laughing, she’s not looking at us. It’s been acknowledged that she doesn’t have the normal eyesight capabilities,” said Patrick Nichols, Phoebe’s dad.

Her parents say it could take weeks or even months for their daughter to recover. In the meantime, their lives are on hold.

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“So here we are and we got to again, we got to wait for Phoebe to do it on her time, so hopefully time will be positive,” said Nichols.

Phoebe is currently in the intensive care unit at Wolfson Children’s Hospital.

By Monday, she’ll be moved to Orlando and go to Nemours for care.

That’s where her parents are hoping for some positive results.

“Help her start crawling, walking, still have to work on tummy time,” said Holder.

If you would like learn more about Phoebe and her family, you can click on the their GoFundMe page.

Cox Media Group