Williamston mom raises awareness to galactosemia on Rare Disease Day

 Galactosemia awareness.
Galactosemia awareness. (WILX)
Published: Feb. 29, 2020 at 6:13 PM EST
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A Williamston mom is bringing awareness to galactosemia.

It's a condition that doesn't allow the body to break down galactose sugars found in dairy and some meat products.

Jodie Solari says two of her three girls suffer from galactosemia, meaning they can't break down sugars found in dairy and some meat products.

"They don't have the enzyme in their DNA to actually break down dairy, So for the rest of us where it turns glucose into galactose into energy, for them, they can't do that and it acts as a poison to them," Solari said.

Galactosemia is similar to being lactose intolerant, but is much more severe. The condition can become life-threatening if galactose is consumed too regularly.

"If my girls get dairy, they might have a stomach ache, they might throw up, but the problem for them is that if they get it on a continuous basis, it would cause brain damage, it will shut down their liver and their kidneys, it causes cataracts," Solari said.

Solari says she found out about her girls' condition within days of them being born due to a newborn screen, she says that's why participating in rare disease day is so important to her.

"After FJ was diagnosed I said well I guess I'm going to be a mom with a cause because I think it's very important to raise money to support research so that we can find a cure.. babies were actually dying because the breast milk or dairy formula was affecting them and causing brain damage and their organs to shut down," she said.

To help raise awareness and funds for Galactosemia, Solari is hosting a "move" event for her Galacto Girls, Francesca and Amelia.

This event is part of GLOW for Galactosemia held in Knoxville, TN on the same date.

Register by clicking on the link, select Virtual Participant and when it asks if you want to Create/Join a team, say “yes” and select GLOW: Galacto Girl Style.

There will be stations where you can be active and also move your mind!

A yoga instructor has been booked, along with jump ropes and other exercise tools.

There will be a Galactosemia 101 stations where you can learn more about the disease, where the monies raised are going and our personal journey.

The fundraiser event will take place on Saturday, March 1 from 3-5 p.m. at the South Lansing Christian Church. No entry fee is needed.

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