Charlotte baby with rare disease celebrates miracle birthday

Published: Apr. 5, 2015 at 11:32 PM EDT|Updated: May. 5, 2015 at 11:32 PM EDT
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CHARLOTTE, NC (WBTV) - Any birthday is special for a young boy, but to Jude's family, his birthday seemed more like a miracle.

Jude Peters has a rare disease that is almost always deadly and his family just got to celebrate his first birthday.

You would think talking about a rare disease would be enough to damper any day, that certainly wasn't the case at Jude's birthday party Saturday.

Jude's father said Saturday was "pretty significant." Especially since about a year ago Sullivan Peters was afraid his son would not live outside of the womb.

Just days after Jude Peters was brought into this world, his parents got the news of his rare condition. Their bundle of joy is diagnosed with Rhizomelic Chondrodysplasia Punctata (RCDP). Something many of you have never heard of and there's a good reason why.

Heather Anderson says "there's about 53 cases right now worldwide." Her son Justice, is one of those 53.

Through Facebook messages Jude's parent reached out to the Andersons for support, what they got in return was worth much more. The Andersons lives just a short drive away from Jude and his family.

Separated by just a few miles the two families support each other every step of the way. They've been through surgeries, hospital visits, and rising medical costs.

"We're desperately, desperately looking for a cure for our children," Heather said.

While there is no cure for RCDP, there is some promising research in Canada, but getting Jude and Justice that treatment is easier said than done. The rarity of his disorder makes it hard to get big medical companies find a cure.

"Pharmaceutical companies are not jumping on the boat to help 53 kids, so what we are looking for is a donor," Jude's grandmother Darla Collins said.

Until that day comes, they will enjoy every second they can spend with their miracle children.

"We have a little fighter a little warrior, a little warrior," Collins said. "And we are going to fight with him the entire way."

To learn more about Jude and Justice's journey you can check out the Prayers for Jude Facebook page or the Justice's Fight page.

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