Joiner Family Praying for a Miracle - KCBD NewsChannel 11 Lubbock

12/11/03

Joiner Family Praying for a Miracle

Last year, the Joiner boys seemed perfectly healthy. Trevor was a budding star on his Cooper little league team, but a year later, things changed.

Trevor wasn't playing as well as he had the year before. He had attention problems in school, and seemed more and more uncoordinated. A trip to the doctor brought a devastating diagnosis, and not just for Trevor.

"Metachromatic Leukodystrophy, a family of diseases that represent a short fall or missing enzyme in the body," says Janet Joiner, mother.

In Trevor's case, this enzyme feeds the brain, so without it, the brain is deteriorating. He has regressed from an active 7-year-old to the abilities and thought process of a 4-year-old.

Trevor's diagnosis came on November 12th. On November 20th, they tested Trevor's little brother, Ross, and he came back positive, too. So, in eight days, Joe and Janet Joiner found out both their boys, their only children, had the same fatal disease.

"The only known treatment for MLD currently available is to alter the enzyme that we carry around in our body," says Dr. Doug Klepper, pediatrician.

Dr. Klepper says the process is called DNA altered gene therapy, which requires a stem cell transplant to give these boys the enzyme they don't have.

"Stem cells are basically cells that are harvested from the umbilical cords of babies," says Dr. Klepper.

Duke University Medical Center is a collection center for umbilical cord blood, and for that reason, Duke is where the Joiners need to be, to try to save both their boys.

Some would argue that the stem cell transplant is dangerous in itself. Why put little Ross through that when he's not having any problems -- yet?

"So yeah, there's a certain risk with the procedure, but its a win-win situation, because you know, right now, there is no hope for them. But with this procedure, we have hope," says Janet Joiner.

"You as a parent will do whatever you can to save your child, and for them to take this step at this point with Ross is monumental. I think it should be applauded. I'd would do the same thing," says Dr. Klepper.

Dr. Klepper also says that the treatment at Duke will offer many challenges -- medically and financially. Each transplant will cost at least $350,000, and the Joiners will need an apartment during their four month stay in North Carolina.

They cannot live in the Ronald McDonald House. If they were at Ronald McDonald, they'd be exposed to other kids who had infections and because they're gonna have an immuno-compromise system, they can't be around that.

Trevor and Ross know they're about to take a trip. They don't know its the trip of a lifetime, to give them more life time, and they don't know their mom and dad and many friends are praying for a miracle.

There are numerous fundraisers being organized at schools and churches, not just in Lubbock, but across the South Plains.

If you would like to make a donation on your own, City Bank has set up the Joiner Medical Fund to help with the overwhelming expenses during these four months at Duke University.

If you would like to get information on various fundraisers for the Joiners, you can call Tracy Autry at (806) 722-0720.

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