LAKE MARTIN, AL (WSFA) - Families from around the world came to Children's Harbor at Lake Martin for the RhizoKids Conference.
This annual conference organized by RhizoKids International is an opportunity for scientists to present findings from their research, and interview each family to obtain the medical history of their RCDP child.
Rhizomelic Chondrodysplasia Punctata is a genetic disorder that is a terminal form of dwarfism. It affects fewer than 100 children worldwide. Currently, there is no treatment or cure for RCDP.
4-year-old Makenna Loyd is was just 6 months old she was diagnosed with RCDP.
"It's pretty difficult just learning to live with a diagnosis as hard as this," said Hannah Loyd, Makenna's mother. "She has taught us strength."
This week the Loyds traveled from Arkansas to attend the conference along with nearly two dozen other families from around the world.
"We have families here from Australia, Scotland, Canada. We have families who have traveled great distances," said RhizoKids International President Melinda Holladay.
Holladay said this is a time to make memories and opportunity to meet with leading RCDP researchers.
"It's so much we are learning here and they examine our children. These children come, some for the first time, and they are seeing doctors who have seen this," Holladay said.
Holladay and her husband have been coming to the conference with their 11-year-old son Ethan since it started. For them it's all about making sure no family feels like they are alone.
"We want to try to create something so that when a new family came along they would have some other support," said Melinda's husband Herb Holladay.
For everyone who attends this is another step towards working to find a cure.
"We are fighting to let them live life to the fullest," said Melinda Holladay.
"This makes us hopeful," said Loyd.
This is the 10th year for the conference. RhizoKids International was founded in 2008 by Tracey Thomas and Mary Ellis, two Alabama mothers, whose sons, Jackson and Ian, were both born in 2007 with RCDP – just five weeks apart in the same hospital.
The mothers formed the organization to raise money to go toward research for a cure for their children and, in doing so, reached out to RCDP researcher Dr. Nancy Braverman for help.
Dr. Braverman traveled from Canada to Alabama to examine their boys, and three other families brought their children to Alabama for exams as well. This initial meeting gave birth to the annual conference that has been held each summer since.
Thanks to the support of Children's Harbor and RhizoKids lodging and meals are taken care of for every family.