SYLACAUGA — It’s the little things that bring great joy and blessings to the family of Jackson Thomas.Jackson will turn 9 months old Aug. 20. His family is so happy to celebrate his life, which has become an amazing journey for his parents, Gregg and Tracey Thomas, and 5-year old brother, Taylor, along with his extended relatives.
You see, Jackson is one of only two children in Alabama who have been diagnosed with a rare, inherited disorder that affects children, Tracey said. This disorder is known as rhizomelic chondrodyplasis punctata (RCDP).
The Thomas family had been eagerly anticipating the birth of their second son in November 2007.
Tracey recalls Jackson’s birth on Nov. 20. She said, “We were so blessed with the birth of our beautiful son, Jackson. The pregnancy was normal with no anticipated complications.” The family was soon devastated to learn their new son has a rare condition called RCDP.
This genetic disorder is a form of dwarfism that is most often fatal. There is no cure and no treatment. It is so rare there are only around 120 or so known cases in history — worldwide.
Tracey said RCDP was first recognized in 1971.
Just five weeks before Jackson was born at St. Vincent’s Hospital in Birmingham, Ian Ellis was born to Wae and Mary Ellis of Centre. Ian also was diagnosed with RCDP.
Since that time, the Taylor and Ellis families have connected, become friends and started to work on forming a nonprofit organization to raise funds for research into what causes the disorder, and to make the public — especially doctors — aware of it.
The task is daunting, since there is little research that has been done or is being done on the rare genetic disease.
What the families find amazing about their friendship is that, prior to Jackson’s birth, the Thomases had been praying for the Ellis family and their newborn son.
Tracey recalled how her sister told her five weeks before Jackson’s birth about a couple in Centre.
“We started praying for that family after learning about Ian’s condition. Little did we realize, in weeks our child would be born with the same disorder,” she said.
Today the two families are working together to form the nonprofit organization to hopefully one day find a way to stop children from being born with this devastating illness.
Tracey, who is on leave as the assistant library director at B.B. Comer Memorial Library, started researching Jackson’s disorder and, along with Mary Ellis, continues searching for answers each day. The two are in contact with families with children who have this disorder.
They have found at least six other families in the Southeast with children who have RCDP and today are getting emails and phone calls not just from those families, but others worldwide.
In talking about Jackson’s birth, Tracey said, “We are so thankful God gave this child to us — it is an experience that has strengthened our whole family and helped us to appreciate so many things we normally took for granted. We know he is on a mission, and we feel part of his mission is to help in finding a cure, and we are working hard to see that it happens one day.”
For the first 12 days of his life, Jackson stayed in the NICU, surrounded by nurses who helped the Thomas family learn how to feed him and care for his unique needs, including dealing with contractures in his legs and sore arms.
Contracture is a permanent contraction or shortening of a muscle due to spasms.
Tracey said once they were allowed to bring Jackson home, “The doctor told us to take him home and love him while he’s here.”
“Jackson is still here today,” she said, and “we are so proud that he is at home surrounded by his family and many friends, including our church family, that love him very much.”
Since Jackson’s birth, he has been to 64 doctor and therapy visits.
Since Nov. 20, 2007, Jackson has had two surgeries to remove cataracts and now wears contact lenses, which Tracey puts in and takes out each day. The contractures in his legs are slowly beginning to loosen up with therapy.
He has many other issues, like hydrocephalus, low muscle tone resulting in having very little use of his arms, and hearing loss, for which he will soon be fitted with hearing aids.
Hydrocephalus is an abnormal enlargement of the head due to an increased accumulation of cerebrospinal fluid.
Even with all these difficulties, he has been able to send a powerful message to so many people with his problems, Tracey said — more than she could every reach in a lifetime with a healthy body.
She said there is no anger or bitterness about the situation.
“We are just ordinary people that ended up in extraordinary circumstances, and we are relying on our faith to help us from day to day. As parents, we normally spend a lifetime teaching our kids lessons, but Jackson has spent his whole life teaching us about who we really are instead. We have discovered that things we thought we believed in and valued all changed the day he was born, and we are much better people because of him.
“We are thankful for each day that we are still a family of four,” she said.
While Jackson has seen many doctors, his mother said he is not going to be needlessly prodded by any doctor.
“But we do want his life to be meaningful for research and to do what is necessary to improve his quality of life,” she said
Mary Ellis has been working with Tracey to establish the nonprofit organization.
The two have raised more than $17,000 through a T-shirt fundraiser, and plan on holding others in the future for the organization.
Just recently, Ian, Jackson and five other children with this disorder met with researchers from Johns Hopkins and Dr. Nancy Braverman with McGill University in Canada about forming a research team to study children with RCDP.
“We’re using the same doctors,” Tracey said. “We feel there is strength in numbers. They can learn so much more from two babies, Ian and Jackson, than with one. Dr. Braverman has dedicated her life to researching this disorder.”
Mary and Tracey contacted Braverman about the children, asking her for input.
The families met in Birmingham sand stayed at the Centennial Lodge at St. Vincent’s. The children were examined by Braverman and doctors from Johns Hopkins and the Kennedy Krieger Institute, as well as UAB doctors.
Preparations are under way for the doctors to do blood work on the children. There has never been a comparison of this many children with the disorder, Tracey said, and no clinical studies have been done.
Once established, the non-profit organization is going to allow them to raise money to help with research and to fund projects.
“We now have got researchers interested from two different institutes,” she explained. “They are going to take advantage of having two children with similar patterns of the disease in such close proximity to each other. We want to help families and researchers. The foundation can help pay for this blood work and other testing that may not be covered by insurance or that the families can’t afford.”
Today, Jackson continues to beat the odds. He weighs more than 10 pounds, gaining some 3 pounds since his birth.
His mother said doctors told them he might gain a pound his first year.
She said so much of what the doctors initially told them has been confusing, but Jackson’s pediatrician Dr. Billy Sellers has been very helpful.
Sellers, she said, has agreed to be on the organization’s board to help read proposals requesting funding.
Tracey has spent nearly nine months learning about the disorder. She said every doctor the family has taken Jackson to has had to be educated about RCDP. Many had not heard of the disorder before.
“That was so scary for us. We’re guiding them. Dr. Sellers has been so helpful in helping us pick the doctors to have Jackson see,” she added.
In the beginning, the family had to take Jackson to doctors three times a week for visits. That has slowed down. He now has therapy once a week.
RCDP children have unusual skeletal structure. The upper portion of Jackson’s arms and legs are unusually shaped and short. This is very painful for him, Tracey said. The parents can’t pick him up like a normal baby, but everyone has learned how to do it, she said.
Tracey said Jackson is eating better and does all his food by mouth, not through a feeding tube like many of these children.
“So many of the things the doctors told us he wouldn’t do, he has done,” she said.
The nonprofit organization is important, Tracey said, for not only research, but also to help families with needs, and to raise awareness of the disorder with the public and in the medical community.
“I don’t think a family should be told they have a baby that may live to be 9 months old or a year, just hours after giving birth. Don’t give them a timeline, they don’t know enough about it,” she said.
Tracey and Mary are working on a brochure about the disorder that places a positive slant on it.
But Tracey points out she doesn’t blame doctors for the way they discussed RCDP.
“Everything was so negative, families like ourselves and the Ellises needed each other. It’s not easy, but there are good things about it,” she said. “I wouldn’t trade him for anything in the world. We’re trying to live as normal as possible.”
Tracey said the family was expecting a healthy baby, but everything changed with Jackson’s birth. She said his birth remains a blessing, with life just being somewhat different than expected.
“You find out what kind of person you are. I think of this as a mission from God. I didn’t see it before Jackson. Everything has been put on hold. This is God’s way of saying here’s your mission. He has given me something bigger to do. I’m thankful every day for Jackson and Taylor.
“Mary and I think the reason our sons were born so close together at the same hospital is there is strength in numbers for research. There’s got to be a reason,” Jackson’s mother said.
Tracey said when the doctors told her and Gregg and their families there was no treatment or cure, that wasn’t acceptable.
“I was waiting on someone to knock on the door to say this isn’t real. Nothing happened. We decided to do something on our own, and try to make something happen for other children. We have sold T-shirts and are planning on a cookbook and more,” she said.
Taylor has started kindergarten, and Tracey said he loves his little brother so much. “Because of Jackson, we have been able to teach Taylor about the difference that we all have and that all people have value and worth. We think that getting to be a big brother to a special child like Jackson will help Taylor grow into a more compassionate adult.”
Tracey has regular contact with RCDP families from around the world. She talks with one family from New Zealand, one from England and another from the Netherlands.
Mary has created a Web site —www.rhizokids.com — for families with these special children.
A mother from England emailed the site recently saying she was looking for support because her 10-month-old had just been diagnosed and she was devastated.
“This is why we are naming our foundation RhizoKids International. We have made some friends from all over, through our Web sites, and I think they will be interested with the fundraising efforts if it will benefit their children,” Tracey said.
The fund is already established, she said, with the nonprofit formation under way. She said those interested may donate to RhizoKids. They can make their check out to RhizoKids and send it to P.O. Box 796, Centre, Ala. 35960.
There are only three locations today where research is being done on RCDP. These are Johns Hopkins Medical Center and Kennedy Krieger Institute in Baltimore, McGill University and the Montreal Children’s Hospital in Canada, and the Academic Medical Center in Amsterdam.
Information on Jackson and his family, can also be found at www.caringbridge.org/visit/jacksonthomas.
