WILLIAMSTON, Mich. (WLNS)– While leap day is a rare day, it’s also ‘Rare Disease Day.’

It’s a chance to learn more about rare diseases around the world and right in our community.

6 News got to sit down with one family to learn more about their story.

Chris, Jodie, 5-year-old Francesca and 22-month old twins, Amelia and Annabelle, live in Williamston.

Amelia and Francesca have a rare orphan disease called Galactosemia.

“It is where they don’t have enzymes in their DNA to break down dairy, well, break down Galactose, mostly found in diary,” said Jodie.

Jodie says they found out her oldest daughter Francesca got the disease when she was just three days old.

“It was terrifying because the first thing you do they say ‘you’re daughter needs to stop breastfeeding immediately, you’re daughter has Galactosemia’ and I look at my husband and say Galacto who? How do you spell that?” said Jodie.

So just how rare is it?

“It actually only effects one in 30 to 70,000 people,” said Jodie.

For most people, Glucose can be turned into energy, but for people with this disease, Jodie says it acts more like a poision.

“It effects their brain, their liver, their eyes, and then for women, their reproductive system,”said Jodie.

When Jodie was pregnant with twin girls, she knew the disease could be passed down to them.

“When Amelia and Annabelle were born, we knew that they might have Galactosemia, so wejust gave them soy formula right away,” said Jodie.

When the test results came back, they found that Annabelle did not have Galactosemia, but Amelia did.

Jodie says they survive by simply paying attention to food labels.

She says there was always a fear that her Francesca would have a hard time in school.

“It was one of my fears that like no is going to want to deal with that at a birthday party, or you know different things and that just has not been the case, everyone has been awesome,” said Jodie.

Jodie says she wants to spread awareness of Galactosemia so other families will be aware of it and no one will have to go through what she went through.

“It was terrifying and you just feel helpless, like it’s going to be the worst case scenario and so I want it to become more common and people like ‘oh Galactosemia, I’ve heard of that, people live with that all the time, it’s okay,” said Jodie.

The family calls Francesca and Amelia their “Galacto Girls” and calls Annabelle their “Dairy Queen.”

“Why not make it something cool?” said Jodie. “It’s kind of like their superpower.”

There will be a “Glow for Galactosemia” event Sunday, March 1st, at the South Lansing Christian Church from 3-5 p.m.

It’s a chance for people to learn more about the rare disease as well as games, activies and also to learn more about the Solari family.