When little Ian Ellis passed away in October 2009 at the age of 2, thousands grieved his death after following his struggle with complications of Rhizomelic Chondrodysplasia Punctata (RCDP). But his legacy of raising awareness, hope for finding better treatment and possibly a cure and bringing people from around the world together to offer support to one another lives on.

Chestnut Bay Resort was once again the setting for the Third Annual Rhizo Kids International Conference which brought doctors, patients and loved ones from around the world.

The Rhizo Kids international Conference is the brainchild of Mary Ellis of Centre and Tracey Thomas of Sylacauga, Ala.

According to the Rhizo Kids website (www.rhizokids.com), RCDP is an autosomal recessive form of chondrodysplasia punctata characterized by defective plasmalogen biosynthesis and impaired peroxisomes. Patients have shortened proximal limbs and severely disturbed endochondrial bone formation.

Mary and Wae Ellis’ son, Ian, was born in 2007 and soon after his birth was diagnosed with several health problems, including RCDP.

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Mary and Wae were told to expect the worst, but they took Ian home and committed to loving him as long as they had him. Ian, surprising a lot of the medical professionals, made progress and accomplished many things his parents were told he could never do. He passed away Oct. 9, 2009.

Tracey and Gregg Thomas’ second son Jackson, was born Nov. 11, 2007 and he and Ian were five weeks apart. Jackson was soon diagnosed with RCDP and made connections with Mary and Wae through the hospital.

Mary said she was pleased with the recent 2011 conference.

“They all came in Thursday and are staying through Sunday,” said Mary. “We had meetings with the doctors yesterday. This year, we did it differently so doctors could meet with every individual family. They are doing the study on the babies, measuring their body parts to see how they are growing, how their progress is.”

In attendance at the conference, Mary noted, were doctors from Canada, Baltimore, the Netherlands and families from as far away as Australia and Canada.

Mary shared about a project Dr. Buee Tien Poll, one of the conference participants, will be conducting in The Netherlands, which will involve RCDP patients from the United States.

“She has a study in place in the Netherlands,” said Mary. “She has been doing it for years, but only had 10 kids in her study so we are going to start flying our kids to The Netherlands and Rhizo Kids is going to pay for the kids to take the medication. It is not a cure, just a treatment.”

“This has gone really well,” said Mary. “We are leaving with hope.”

Dr. Poll also attended the 2009 Rhizo Kids Conference.

“This (conference) is really very well organized and the parents are very involved in wanting to do something for their kids,” said Dr. Poll. “I am really amazed that they can organize something like this.”

Returning for the third year were Herb and Melinda Holladay and family from South Carolina. Their son Ethan, who has RCDP, will turn 4 July 9.

“It gets better every year,” said Herb.

“We love it,” said Melinda. “I found Mary, Ian’s mom when Ethan was six months old. And then got in touch with Tracy through her. They set up the conference and that it is how we found out about it but we came to the very first one that they had. I found them after we Ethan had his diagnosis.”

“We are very hopeful,” said Melinda. “We are excited to see what they come up with next. I am hopeful that one day they will find a cure. We have had a lot of good doctors that have come and talked to us through the years and it does give us hope for the future for RCDP kids.”

Accompanying the Hollodays were Melinda’s parents, W.L. and Gail McCabe who live next door to them in South Carolina. This was their second year to make the conference.

“I am very impressed,” said W.L. McCabe. “I think there is a lot of good discussion and a major factor, I think is the support that parents receive from each other. They get to know each other and realize that each family is going through the same type of thing and they are able to discuss the things they have encountered. And possibly, they can discuss advantages that the others have not found yet. They can sort of swap stories and things they are doing with each other that might be helpful to one doing one thing that the other has not encountered yet. It is helpful to the mothers to talk with each other.”

“We have enjoyed it,” said Gail McCabe. “It is a good group support. That is what I like. Melinda has someone she can talk to, interact with the mothers and tell each other what is going on with their child and maybe help some mother that hasn’t been though it yet. It is a good thing.”

“And I think it is good for the siblings to come,” said Melinda. “They can interact with someone who understands what it is to have a special needs sibling. They are not different here. They are part of a group. And that is a huge factor for our boys, I think. We have two older boys. Taylor, 14 and Landon, 7 and they love it because they are interacting with other children who understand what their life is like.”

Also helping out with this year’s conference was Mary’s mom and Ian’s grandmother, Monie Kelly.

“I think it has gone real well,” said Monie. “I just think it is real beneficial for the parents to get together, talk to each other and know what really works. The doctors tell you one thing and mothers and fathers taking care of them know the real truth. It is not just book knowledge. But it is encouraging to see some that have lived so long.”