Jesus Gives MPS Families Victory in Death
- Tuesday, February 25, 2003
The pregnancy was hard, but Kim and I were happy that it soon would be over. Everything seemed fine as the doctor brought Loren into this world through a C-Section...but nothing would ever be the same again.
Two days later, he nearly died and was airlifted four hours from home. After nearly a year of hospital visits, surgeries, sitters, teaching Loren to eat normally and learning to read various medical devices, we were finally ready to settle down to a "normal" life with three healthy kids but fate took a different twist.
Just shy of his first birthday, Loren was diagnosed with a rare terminal disease - Mucopolysacchridosis (MPS) Type I-H or Hurler Syndrome. Hurler Syndrome is one of three manifestations of MPS Type I and the most deadly. Untreated, Hurler Syndrome will normally kill the victim in five to 10 years and it's not a kind death.
There was only one viable treatment option for Loren - a bone marrow transplant ("BMT"), but there were many in the MPS community who shunned the procedure due to its poor success rate in the early 1990s. With only a 60-70 percent chance of survival, my wife Kim and I chose to give Loren a chance at a normal life in spite of the risks.
In December 2000, we watched helplessly as a second transplant appeared to be failing, but God had other things in store. In May of 2001, God took action; my wife received notice from the doctor that the transplant was in full bloom. Loren had plenty of the right marrow and that marrow was producing enough of the enzyme to arrest his disease. God healed my son.
Loren's story has what one might call a "happy ending," but along the way we've met many good friends whose story did not end in quite the same way.
I need to stop a moment and tell you the contradictory emotions that flood a family at the beginning of the bone marrow transplant process. Joy, excitement and other good feelings are there because your child is about to be freed of the worst of an insidious disease. At the same time, fear that something will go wrong haunts you. If something goes wrong, your child will die slowly or, worse, your child would be returning to Jesus much sooner than you want.
Our family went through these feelings, even to the point of second-guessing our decision after the transplants. It's natural and the heroes of this story endured the same uncertainties and doubts, but they still moved forward.
While Loren and Kim were still in Fort Worth, Texas at Cook Children's Medical Center, the transplant coordinator asked if she would mind talking with a family whose child had Hurler Syndrome, like Loren.
Like us, the family of Dylan Smith was looking into a transplant for him. It was his only hope also. Nothing else had yet proven able to keep the Hurler wolves at bay.
Kim immediately said yes and called his mother Katherine. The two women struck up a friendship that will endure forever. Loren and Kim also had the opportunity to meet with Katherine and Dylan while he was in the hospital during one trip.
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