Ally turned 2 on Saturday, March 11th. When we told her that we were going to go to the zoo for her birthday, she got this surprised look on her face and said "There's animals there!" We decorated the house with Dora the Explorer decorations and balloons so that she could see them when she woke up. She was so excited! We also got her a Dora the Explorer doll house. She got out of bed and went straight to the house and started playing. She LOVES Dora. Her Grandma and Grandpa Schneiders joined us for the day. Everyone had to wear Dora party hats. Check our our pictures to see the fun.
We were able to add about 400 people to the national registry at the drive put on by Channel 13 on Friday. Many of the people coming in said that they were coming to try to help Jackson. It's very overwhelming to see so many people that don't even know us that want to help. Never doubt that there are a lot of wonderful people in this world! Thanks to Christi Myers. She is the reporter responsible for the story and the drive. She's been a tremdous help to our family. It's obvious that Christi really cares about the people that she is reporting about.
See below for the story on the abc13 website. The link is http://abclocal.go.com/ktrk/story?section=health&id=3979442
You could be a match for JacksonYoung boy with rare condition needs bone marrow transplant
By Christi Myers
(3/10/06 - KTRK/HOUSTON) - Imagine learning that your baby has a genetic mutation that will keep him from living to be an adult. Now imagine that there's only one cure, but you can't buy it. You have to depend on a stranger. That has happened to a member of our Channel 13 family. Two years ago, we told you little Jackson Biven's story. He's the son of one of our producers. But we still have no happy ending.
Jackson is four-and-a-half years old. He's getting therapy to learn how to eat. Skull tapping is designed to help him swallow.
"He ate two of them last Thursday," said Amanda Letsos with Texas Children's Hospital home health, referring to goldfish crackers. "Today, we're shooting for three, so we'll see."
It's a victory for his parents, Brenda and Steve Bivens. Their son has a rare genetic disorder of the immune system.
"He gets a lot of stomach pain which then shuts down his eating," said Brenda.
Jackson spent much of his life in the hospital, including his first birthday.
"What's scary is not knowing if your child is going to make it or not," Steve, a staffer at Channel 13, told us.
Jackson stays home away from germs that his immune system cannot fight. But he still gets sick from naturally occurring bacteria in his own body.
"Jackson's immune system does not work basically at all. There's very little function that he has," said Brenda. "He's basically like the bubble boy."
Even isolated and on many medicines, life is still hard.
"With the nemo mutation, there's only 14, 15 people in the world that have that mutation that Jackson has and no one has ever survived past age 20 with this mutation," said Brenda.
A bone marrow transplant is the only treatment. It could give Jackson an immune system.
"This could be a complete cure," said Brenda. "He could live a completely normal life."
But no one in their family is a match. They're spending their savings trying to have another child who might be a match.
"Sometimes it's overwhelming because you're afraid," said Steve. "You're afraid for your little boy. We know if we don't get this, he's not going to survive. And so it's very hard to live with."
So they wait and they pray for an hour-long transfusion of the right stem cells or bone marrow cells, cells that could give their young son a future. And they plead for people willing to donate.
"Is it gonna hurt? Am I gonna feel sick? Am I gonna be uncomfortable? Am I gonna have any major complications? And the answer to all of those is really no," said Dr. Elizabeth Shpall with M.D. Anderson Cancer Center.
You could be Jackson's match. Today from 6am to 6pm, take part in Channel 13's Spring Blood and Marrow Donor drive. Give blood and at the same time, a few more drops of blood will put you on the national marrow donor registry.
Call 713-790-1200 or click here for information on locations as well as how you can donate to help Jackson Bivens.
ABC13 News Team
Christi Myers, 13 Healthcheck