A deadly disease. Two children die. How can the families survive their loss? This article explores how Jesus helped and is helping two families overcome the devastating loss of a child during a bone marrow transplant. Can there be any victory in death? Yes, if Jesus is allowed to guide the survivors.

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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.

Dylan's Story

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.

Surprise Gifts

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.

Cameron’s Story

Cameron Winn loved Eeyore. Winnie the Pooh's sad sack little donkey friend was just about the best thing in the world to this cute little boy who was so full of life. We first met Cameron when he was in the hospital. He had taken ill near to the time he was to begin the transplant process. His mother, Emily, and I had corresponded by email and we were in Fort Worth for Loren's checkup.

I walked into the room and very clumsily introduced myself. After finally explaining who I was, Emily and her mother introduced me to one of the biggest one-year-olds I ever knew. He may have been younger than Loren, but he was a strong, stocky little kid. It was a joy holding him. It didn't take long for him and Loren to become friends and no wonder. Both children have something about them that just naturally makes you want to be with them.

Not long after that, the Winn's plans were changed when the donor became ill. They continued to search for a donor and wait at the Ronald McDonald house.

We visited again in June 2001 and it was such a joy to watch the children play. Cameron performed many tricks, including falling off a rocking horse. As hard as he fell, I expected a lot of crying, but the little guy just got up and kept on going. He was a ball of energy.

Cameron's mother, Emily, tells the story on his website of when he tried to put the tape in the VCR. He was putting it in backwards and it just wouldn't go. Emily told him to turn the tape around and try again. Cameron dutifully turned himself around full circle and then tried to put the still backward the tape in again. It still didn't work.

Kim, I and my children did not know when we left him that day that we wouldn't see him again in this life.

Just like Loren, Cameron was in Fort Worth for a BMT for Hurler Syndrome. Tragically, after the transplant he suffered a massive heart attack and 16 days after receiving what we hoped was his life giving transfusion of marrow, Cameron lay in his mother's arms and returned to Jesus.

Once again, a beautiful child was taken from the world. In general, children are wonderful gifts of God, but children with terminal diseases just seem to radiate love and gratitude for every little thing.

Jesus tells us to let our light shine so others may see it and these children are experts at following the Lord's wishes.

We were all heartbroken at losing Cameron, but of course no one felt the loss more keenly than Emily, Allyson and his grandparents. As Emily tells it, her first natural reaction was to ask, "Why God, why would you take this baby?! He is too young to die, he shouldn't have died! Why God? After all we had to do to get here, why would you let him die?!"

As is so often the case, God did not answer Emily directly. Rather, He used the words of II Samuel 12:23 to shock Emily into the realization that He (God) was in control and Cameron had accomplished the purpose for which he was alive. It was Emily's duty, and Allyson's also, along with the rest of the family and friends, to live their lives in accordance with God's plan for them. It was their duty to believe these words of II Samuel 12:23, "...I shall go to him, but he shall not return to me."

These words, given to us in the Holy Bible were enough to spur Emily and the family into action. Though not discussed here, during the long ordeal with Cameron's disease, Emily and her husband separated. Thus, Emily and Allyson were left to rebuild their lives after losing two very important parts of their lives. Thanks to God, though, they did not lose the most essential part - a loving and faithful Lord Jesus Christ.

They became highly active in their church. Through the guidance of a wise pastor and Sunday School teacher, Emily and Allyson have come to terms with their losses and have been able to move forward. Even though they both miss Cameron still, Emily writes:

"I have found that I am a pawn for the Lord, so to speak, since Cameron died. It has been a work in progress, but I know that he is using me, through Cameron, to serve Him and love Him. I know that Cameron is the reason for that, and Allyson knows it also. She speaks as a true child of God, and I see Cameron in her all the time. We have both grown in our faith and grown in Christ, because of Cameron. He was our angel, truly Heaven-sent. He is my reminder that God is in control, so that is where we put ourselves, in his control."

The lives of Dylan and Cameron are just two examples of how even the shortest of lives can have immense effects on the lives around them. God took their lives, healed others and then brought them home to a truly deserved rest. But even in their return home, God used their influence to strengthen the faith of those who loved them.

When pain and loss occur in our lives, we always want to blame someone else. Sometimes, we even have the right to place the blame on someone or something else, but God is never the one to blame.

Instead, He grieves with us and asks us to give our grief to Him. He wants to take our grief from us and fill us with the comfort of faith in Him. When we learn by the examples of Dylan's and Cameron's families, God grants them and us a great gift - the gift of healing because of the death and resurrection of his son, Jesus.

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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 at www.mpssociety.org 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.