Church hosting benefit for KMS student

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Church hosting benefit for KMS student

Hardin County Index - Lumberton,TX*

By AMY A. COLLINS REPORTER

http://www.thehardincountynews.com/news/2008/0423/News/021.html

KOUNTZE-While most 14- year-old boys may not want to mow the yard

for various reasons, of Kountze has a pretty good

excuse.

, as well as his two younger brothers, have been diagnosed

with a rare genetic disease called chronic granulomatous disease,

which causes white blood cells to lose their ability to destroy

certain bacteria and fungi.

The s' church, Voth Baptist Church, is having a barbecue

benefit April 25 and 26 to help pay for 's medical bills

following his latest infection and time in the hospital.

In addition to lawn work, the boys can't venture into caves,

play in barns, or jump into the lakes and ponds around the area.

Each of these places, in addition to others, are breeding grounds

for various bacteria and fungus which could prove fatal for

and his brothers.

" Every family has their 'thing' that they deal with together, " Tammy

said. " This just happens to be ours. "

Despite their obstacles, the s try to be a normal family: Tammy

is a stay-at-home mom with a defiant and bright-eyed 2-year-old,

Marcus, a rough and tumble 7- year-old named Adam, and the oldest, a

quite, but funloving 14-year-old . Their father,

Sr., is a pipe fitter with Echo Maintenance.

Normally, the disease only affects every one in one million

children, making the brothers a rare case.

Tammy said that since the disease only affects part of their immune

system, the boys can still attend public school and do most normal

activities.

" They get the sniffles and allergies like anyone else, " Tammy

said. " They can fight viral infections; that part of their immune

system isn't affected by the disease. You wouldn't be able to tell

they had a disease until they were sick, " Tammy added.

Like most other boys his age, likes to watch TV shows, his

favorites being CSI (the original) and NCIS, play video games like

Rock Band and Guitar Hero, play football, and go deer hunting. He's

also a member of the school choir and is active in his church's

youth group.

was diagnosed with the disease when he was four months old

and has had three major infections in his lifetime.

Adam has had a few lung infections, while little Marcus hasn't

suffered from any infections, making him a prime candidate for a

bone marrow transplant, which has proven to be a cure for the

disease if the procedure goes successfully.

" We'd want to do [the procedure for Marcus] early, " Tammy said. " He

hasn't had any infections, so we'll talk to the doctors on our next

visit. "

All three boys have to take preventative medications everyday, which

consists of a variety of pills and shots.

They also attend regular check up visits with their doctors in

Houston, which includes MRI and CAT scans to check their lungs for

infection.

" It's an ongoing thing, " Tammy said. " It's hard as a parent because

there's fear and you're not in control. You don't want to see your

child sick, but you're also trying to keep a balance for their life.

You want to keep them as normal as possible without putting them in

a bubble. "

Although the family is careful, that does not guarantee an infection-

free life.

Late last year, suffered from an infection in his leg.

According to Tammy, the doctors said the infection was from a fungus

found on tree bark, but no one knows how the fungus came to grow on

's leg.

was out of school for a few months, but he managed to keep up

his grades, and maintain his AB average. Although he returned to

school in February, can no longer play football because he is

still receiving treatment for his leg.

" The hardest thing in school is keeping up in athletics, "

said. " I think next year, I'll try for golf and tennis though. "

" He's a tough kid, " Tammy said.

Tammy recalled a time when had to take amphotericin, an

antifungal medication that he was hooked up to for eight hours at a

time, making him sick and weak, much like the affects of

chemotherapy on a cancer patient.

" No mother wants to see their children sick like that, " Tammy

said. " You start to wonder, 'Did I allow him to do something that

could cause this?' and you worry that they may get something the

doctors don't know what to do with. We don't think about that

often. "

Tammy said she receives a lot of help from friends and family, like

her mother Bogner of Iowa, and and Ruby of

Beaumont.

" Tammy does a remarkable job with the boys, " said. " I don't

know how she does it; she must have a strong faith. "

" This has really strengthened my faith in God, " Tammy said. " We've

been blessed that they aren't constantly sick like others with the

disease. "

The barbecue benefit will help pay for medical expenses from

's last trip to the hospital and the treatments following.

While the s have medical insurance, it doesn't always cover

everything, especially with the extensive and continuous care all

three boys need.

The s plan to be at the benefit next weekend, helping the

church with orders and meeting the residents who will be supporting

the family through donations and purchases.