Jesus Gives MPS Families Victory in Death
- Jim McClelland Contributing Writer
- 2003 25 Feb
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.
Kim and Loren would be coming back to our Louisiana home before Dylan began his BMT journey, but that didn't prevent us from doing what we could to help. Kim busily prepared a care package of all the things Dylan and Katherine would need while they were isolated in their little hospital room and I kept up with the Smiths by email.
On Sept. 14, 2000, I planned to arrive at the hematology clinic at Cook Children's Medical Center to talk with the Smiths and drop off the care package. I stopped at the clinic first to get the results of Loren's latest blood test. They were not encouraging.
Shaking that off, I saw the transplant coordinator and asked her how Dylan was doing. It wasn't a good sign that Kitsy took me off to the side of the waiting room.
During surgery, the surgeon nicked Dylan's heart and he bled to death or, as I think of it, he returned to Jesus.
It hurt. It hurt badly, but I knew that Jimmy and Katherine were in much deeper pain. That night, I emailed them. The response I received later told me that their hearts were breaking. They were not far away from Dylan's second birthday. The Smiths were on the edge of a significant victory. A victory over fear and death, but in one tiny instant of time, their victory was turned into certain defeat.
A Different Kind of Victory
So it seemed, but just as on Easter morning, God was not going to allow this family to be defeated. The hand of His enemy would not thwart God's purposes. Satan will never win the war with God's people.
I have seen over time a marked change in Katherine. The first few times we emailed one another, I could tell that she was only barely alive, just going through the motions of staying alive after Dylan was ripped from her.
But, even as they were suffering the loss of their child, I could see Christ's love in the Smiths. One day, not too long after Dylan's death, presents for the children and a check arrived. It was a check to help pay for Loren's oxygen concentrator and it was not a small check. Katherine and Jimmy had sent it.
Not long ago, I saw a thank you note on another child's website thanking Katherine and Jimmy for their generosity.
What keeps great people like Katherine and Jimmy going in such dark times? Of course there is their family; brothers, sisters, Jimmy's children from a prior marriage, Katherine's niece and numerous friends serve as a support.
Still, there must be some greater force that keeps the spark of life going when all seems lost. For Katherine, Jimmy and the children, it was Jesus.
Jesus kept life in their hearts and gave them the faith to know Dylan is with Him. His spirit of love and generosity helped Katherine and Jimmy reach out to others and it was in helping others they could find comfort and meaning in their loss.
Dylan gave us all tremendous gifts. While still with us, Dylan gave all who knew him his love. His smile and giggle will be with them forever. The prayers so many of us prayed because of him brought us all closer to our Lord Jesus.
Even on his return to heaven, Dylan left us a gift. The cause of his death was preventable and litigation ensued. Because of that litigation, new procedures and training protocols have been implemented that will save countless lives in the future.
Even greater than all of the other gifts, though, was the gift he left for Katherine, Jimmy and his family. He left a legacy of love and faith.
Katherine says, "If one person came to know God and the saving power of Jesus because of Dylan, if only one soul was saved, then all the pain we have endured here on earth was worth it. My relationship with God has grown and teaching God's word to our other children has taken on an even bigger importance.... The last time we saw Dylan alive, we told him how much we loved him. The last thing I did was blow a kiss to him. I can still see his little face looking over the nurse's shoulder...."
What a wonderful legacy.
February 25, 2003 was designated MPS Day by the National MPS Society in honor of another beautiful child named Katie Shine. Katie had another form of MPS called Sanfilippo Syndrome and February 25 would have been her birthday had she survived to 2003.
Because of her, a wonderful woman, Linda Shine, became president of the MPS Society and, along with a dedicated board of directors and volunteers, helped move us all closer to the day when MPS will be treatable and not deadly. Please take a moment to visit the MPS Society Web page and consider helping in the fight against this insidious killer of our children.
If you are interested in helping with efforts to save lives through bone marrow transplantation, please take a moment to visit the home page of the National Marrow Donor Program at www.marrow.org.
Jim McClelland is a CPA and author based in Shreveport, Louisiana. He lives with his wife Kim and children Patrick, Patricia and Loren in Benton, Louisiana. You can learn more about the topics in this article and his book Cookin' At Cook, A Babe in Transplantland at the website Loren's Place.
In Part Two of this article, you will meet another MPS family and learn how the Lord brought them to victory through death.