Patients & Families
When Ben and Luanne Russell envisioned Children’s Harbor and what it could potentially mean to children, an image like what is happened July 13th-17th at the facility on the shores of Lake Martin was exactly what came to mind.
Children’s Harbor has hosted 18 families from all over the nation and the world for RhizoKids, a camp and educational experience for those who have children with a rare and terminal form of extreme dwarfism called Rhizomelic Chondrodysplasia Punctata or RCDP.
This is the first year Children’s Harbor has hosted the gathering that began in 2008 as a tool for parents who have children with the disease that is known to exist in about 100 children worldwide. RhizoKids Co-founder Tracey Thomas of Sylacauga said they are blessed to have found Children’s Harbor and humbled by the generosity and hospitality that everyone has shown this week.
“When we started this back in 2008, we didn’t know how or what this would become,” Thomas said. “We have used the Centennial Lodge at St. Vincent’s hospital and then after that first year we moved to Chestnut Bay on Lake Wiess up near Centre. It was nice, but it was very expensive and it wasn’t designed for special children like ours.
“When we were awarded the grant here at Children’s Harbor, I just cried. We have a place that was designed with them in mind and it has been incredible. It’s a feeling that we have finally found a home. The people here have been incredible. The money we save will allow RhizoKids International to fund research projects that will help improve the quality of life for children with RCDP.”
RhizoKids got its start in 2007 when Thomas’ son, Jackson, was born at St. Vincent’s in Birmingham. She learned that another child, Ian Ellis, had been born five weeks earlier at the hospital that also was diagnosed with RCDP. The two families were contacted by hospital officials. To have two children in the same basic area with the rare disease was extremely unusual. Thomas and Mary Ellis met and started doing research on ways they could help their sons.
“All of the articles about RCDP that we could find on the Internet were written by Dr. Nancy Braverman from Canada,” Thomas said. “Knowing it was a long-shot, we decided to contact Dr. Braverman to see if we could bring our boys to Canada for her to examine. They emailed back and said ‘No, she will come to you.’ A short time later we had set up the first meeting and other families we had been networking with also came. It was so great to get together and share information and learn from the others. We knew it was something that we had to continue.”
But in the previous locations, the families had to rent a circus-type tent and eat outdoors in the Alabama heat. This year, meals are enjoyed inside, with air conditioning. Thomas said that has brought a whole new level of comfort to the group.
Each year a team of doctors and researchers come to the gathering to examine the children and track the trends and advancement. Seminars and presentations are made, but parents like Mindy Lee from Ohio, who has two children, Jake and Jordan, who have RCDP, say the sharing between families is one of the most valuable parts of RhizoKids. “People may see you and your kids and say they understand, but they really can’t fully feel what we feel,” Lee said. “For so many of us, we’ve been told at one time or another to just take your kids home and love them while you have them. But to be around people who really do understand, who you can share stories and things that have helped them, that is so valuable.”
Thursday, Dr. Braverman and other medical professionals examined children in the meeting room. Outside they enjoyed the pool, rides on the lake and their families and siblings were able to be together, have fun and be around other families who also know what they go through on a daily basis.
Herb and Melinda Holladay of Banning, South Carolina watched as doctors tested and measured their son, Ethan, who recently turned 9 years old.
“This is an incredible place and what we get out of coming here is something that we can’t say enough about,” Herb said.
Children’s Harbor CEO Myrle Grate said he was excited that Children’s Harbor was able to help such a deserving group as they strive to improve the quality of life for their kids.
“When we first heard about RhizoKids, we felt like this would be a perfect place for them,” Grate said. “Through our grant program, we were able to make it available to them so that they can put the money they had been using for facilities to use for research and other things to improve the quality of life for these families.”
Thomas said that this year’s group includes families, children and grandparents who are searching for more information and how they can help their special kids. “Even though we lost Jackson, I knew this was something that I had to find a way to continue,” Thomas said. “It does too much good. I mean, we know our kids are sick. But in a setting like this where it’s not clinical and we see people enjoying life and sharing success stories and even the stories of dealing with a loss, it only confirms that feeling of how important this is.
“We can’t thank Children’s Harbor enough for making it even easier for us to continue doing what we do.”