The last day of February is known as Rare Disease Day.

This year it falls on the 29th, the most rare day of the calendar.

An estimated 300 million people suffer from a rare disease, meaning a disease that affects fewer than one in 2000 people.

Our Kelcey Starks introduces us to one Louisville family who is making a difference.

He's a great kid.

He is full of life, full of personality.

He's a really big personality in a really small body.

Robert Vines is a lot like any other eight year old boy.

He loves sports and school.

He wants to be a scientist when he grows up.

The first time I heard about McGill, I thought about being a scientist to help people and and get better medicines for people.

His plan includes finding a cure for the disease he was born with called Moore Keo Syndrome.

It's a rare birth defect that affects one in every 200,000 people.

He started off just like any other child through two and a half years old.

In fact, he was high on the growth chart.

Everything was normal, you know, testing wise.

And then.

But we noticed he had a bump on his back in the bathtub.

And we just that's all it was was just a bump on the back.

Just Mom.

Mom got something.

Something wasn't right.

We thought we cleared all of these hurdles, right?

It turns out Robert was born without an enzyme that breaks down sugar chains naturally produced in the body.

Over time, those chains accumulate and cause damage inside to everything from cells to bones.

He might not reach three and a half feet tall.

So we're talking extreme, short stature.

And, you know, when you've got you're trying to fit lungs, heart, all the organs in it just it obviously causes a lot of problems.

Medicine.

Surgery can't hold with more surgeries.

Since his diagnosis at two and a half years old, Robert has had surgeries on his neck and legs, which meant a neck brace for six months, a full body cast for six weeks, and weekly enzyme treatments lasting 5 to 7 hours each week, which keep the sugars from building up in his cardiovascular system and organs.

The Vise family created rooting for Robert.

The only organization in the world focused on finding a more quiet cure.

You don't want to go on this journey.

This was not something that we asked for.

And you hate to see your son go through it.

But again, there's a lot of silver linings and it's it's incredible.

With the Louisville and Kentucky community have done.

Since 2021, they've raised more than $1.6 million, almost exclusively from the Louisville community.

And now they think they can help a lot more people than just Robert.

We think that affecting being able to cure, cure one disease, even though it's a slightly different disease, you should be able to apply the concept elsewhere.

And that's exactly what happens when it comes to rare disease research.

Finding what works and what doesn't helps narrow the field for all diseases.

I want him to live a full, happy, healthy life and his health feels different.

Help me.

Check.

Stand, check, Panel, check.

I know he's his life is going to come with challenges, physical challenges.

I want him to be able to be successful and I know his brain can do that.

And I want his body to be good enough to keep up with his brain.

And let's go back.

What a beautiful little boy.

We wish them all the best.

Before devices, another family from Louisville spearheaded the treatment that Robert receives today.

Hear that part of the story on an upcoming episode of Inside Louisville in March.

By the way, Kentucky is one of 27 states that has a rare disease advisory council, giving patients a voice in state government.