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HERALD/REVIEW
SIERRA VISTA - Today is Jonathon Scott Van Nierop's second birthday.
It's a time for birthday wishes, balloons and blowing out candles. Jonathon's parents, baby brother, family members and close friends are gathered for the festivities.
But amid the celebration, there are some tears.
 Rebekah and Scott Van Nierop, with their 3-month-old son, Alexander, visit the grave of Jonathon Scott Van Nierop, who was born with a rare brain cancer named atypical teratoid rhabdoid teratoma. The Van Nierops want to raise awareness of the disease and will have, for starters, a ribbon titled "Another Treasure Remembered Today" for sale to raise funds for a cure. Ed Honda€Herald/Review |
Balloons are released over Jonathon's graveside and the group watches as they drift gently toward the sky and disappear.
The headstone reads, "An angel in the book of life wrote down our baby's birth, and whispered as he closed the book, 'too perfect for earth.' "
"I miss him so much, but I know he's OK," said Rebekah Van Nierop, Jonathon's mother. "And I know some day I'll see him again. The sun is brighter and the sky is bluer because my little angel is up there."
Jonathon, born on Sept. 1, 2003, was Scott and Rebekah Van Nierop's first child.
"He was the light of our lives, absolutely perfect in every way," Rebekah said.
The couple hope to keep his light shining by raising funds for cancer research that will help other children.
When Jonathon was 4 months old, there were signs that something was wrong with their baby boy.
"He kept cocking his head to the right side," Rebekah said, talking about the terrible events leading up to their son's death. "After an examination by Dr. (David) Leopold, his pediatrician, he was concerned that Jonathon had a neurological problem. We were sent to University Medical Center in an ambulance."
Once at the Tucson medical facility, doctors took a CAT scan of Jonathon's head and found a mass on the back side of his brain. The discovery meant another ambulance ride, this time to Phoenix Children's Hospital. Two days later, Jonathon was undergoing major surgery to remove the brain tumor. Lab tests that were conducted on the mass did not bring an encouraging diagnosis.
Doctors told Jonathon's anxious parents that he had a rare and aggressive form of brain cancer, one that attacks babies and young children.
The pediatric cancer, called atypical terratoid rhabdoid terratoma, or ATRT, strikes quickly, is found in the brain, eyes and kidneys, and is almost always fatal.
"Basically, if your child is diagnosed with ATRT, it's a death sentence," Scott said. "When he was diagnosed, we were told we would have about six months to spend with our child."
Jonathon lived to be 10 months old. On July 19, 2004, after a gallant fight, he died in his mother's arms surrounded by family in his Sierra Vista home.
"Seeing the peace on my son's face after he fought so hard and endured so much was absolutely beautiful," Rebekah recalled.
"My faith is what got me through this terrible ordeal. I know in my heart that things happen for a reason."
Now Rebekah and Scott are on a crusade in their son's name. Determined that Jonathon's memory lives on, the couple have started a campaign to raise money for ATRT research.
All donations will go to St. Jude Children's (Research) Hospital in Memphis, Tenn., specifically for ATRT research. Internationally recognized for its work in finding cures and saving children with pediatric cancer, St. Jude is the single largest center in the United States dedicated to the treatment and research of cancer in children.
"When Jonathon was born, I looked at him and I just knew he would be something special, that he would make a difference in this world and do great things," Scott said.
"This campaign is our way of keeping his memory alive forever. We want to stop ATRT and keep it from killing more babies."
Rebekah and Scott are planning a walk-a-thon that they are dedicating to Jonathon and his battle against the cancer. To be held in July on the weekend closest to the anniversary of Jonathon's death, it will be the couple's first attempt at a fund-raising event as they begin their crusade. Rebekah, who has lost a number of family members to cancer, said she and Scott are receiving tremendous support from her family.
"Cancer messed with the wrong family when it messed with us," Rebekah said with a determined smile.
The family has designed a magnetic ribbon that bears the acronym ATRT, but instead of naming the rabdoid cancer, it says, "Another Treasure Remembered Today."
"I refuse to put that horrible cancer on my beautiful child's fund-raising ribbons," Rebekah said.
The ribbons are gold and white and represent all children fighting cancer.
"We chose gold because children are golden and white because it's the color of angels," Rebekah said.
On May 23, Rebekah and Scott were elated over the arrival of their second son, Alexander Jonathon, or AJ. A healthy, happy baby boy, Rebekah said they cherish every moment they have with him.
"I hope Jonathon's story will help people be more grateful for their children and for all the wonderful things they have," Rebekah said. "Our greatest wish for Jonathon is for him to be remembered forever. As a family, we will continue to celebrate his life and those 10 beautiful months that he gave us."
Ezai I. Martinez wrote on Jun 24, 2009 7:58 PM: