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Community rallying support for Chesterfield County girl battling rare disease

Posted at 12:42 PM, Jan 18, 2024
and last updated 2024-01-19 21:29:47-05

CHESTERFIELD COUNTY, Va. -- A young girl in Chesterfield is fighting a rare disease, having spent more than 250 nights in a hospital over the last few years.

This week, local businesses are teaming up to help defray some of Chloe Callaway’s medical expenses.

Chloe sings & giggles. She makes tiktoks and is into hair and makeup trends. Chloe Callaway is a very typical 12-year-old girl, but with a very rare disease.

“We have very very hard days where the future is the thought of the future and what it could hold or what it might look like is really hard to swallow,” said mom Emily Callaway.

Emily says she’s lived in chronic crisis mode for four years trying to figure out what was ailing her young daughter. Eventually, Chloe was diagnosed with a Central Collecting Lymphatic Anomaly with a PIK3CA genetic mutation.

“Everybody’s body has a lymphatic system we all produce lymphatic fluid. So for Chloe hers dumps out of her body rather than recirculating and going back into your venous system. So that flow that you need for your your vitamin D, your blood pressure's your immune system, all of that doesn't stay in her body,” explains Emily of the painful disease.

The family of 6 has essentially rearranged their lives around Chloe’s procedures. Since early 2020, they’ve traveled constantly between Norfolk and Philadelphia for things like a central line, a feeding tube, stomach surgeries, permanent nerve blocks, therapies and more. Chloe is currently receiving palliative care for her symptoms.

“I feel like I'm trying really hard to like, make people proud. At some points, even if I'm like, really at my lowest and I'm really just trying to make people proud. Even though I'm very tired,” said Chloe.

Chloe’s village of supporters are certainly proud of her charm and her bravery. So much so that this Friday, local entrepreneurs are hosting an all-white attire fundraiser for the family’s numerous expenses at a new event space, The Cardinal, in Moseley.

“It just means so much to me, to make me feel like I'm not alone in this because this a chronic life threatening. I mean, you know, like being in a really rare world. It's very isolating,” said Emily.

Hosted by Elisa Hatfield of The Playfactory Co., “A Night in White,” will feature a silent auction, food, drinks and music.

You can support Chloe and her family by clicking here.

Tickets benefiting the Callaway family are available online.

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