Local parents team up for Boston Marathon to benefit Children's Hospital
By Sue Wambolt, Contributing Writer
Shrewsbury/Grafton – For Octavio and Jessica Melo of Grafton, a family trip to the New England ?Aquarium March 1, 2008, began what would become a long medical journey. It was here that their then 2-year-old son, Jameson, took an awful spill, landing him in the UMass Memorial Medical Center emergency room.
An initial CAT scan revealed what was believed to be a brain bleed but, after further investigation, an MRI was scheduled because a lesion on his brain (unrelated to the fall) was discovered. After a follow-up MRI at Children's Hospital, Jameson was given the preliminary diagnosis of Sturge-Weber Syndrome.
According to the Sturge-Weber Foundation, “Sturge-Weber Syndrome is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities.”
Since the initial diagnosis, Jameson has also been diagnosed with the brain disorder, Chiari Malformation, and most recently, the digestive condition Celiac Disease.
In the years that followed Jameson's initial diagnosis, Children's Hospital's Sturge-Weber Clinic, Celiac Clinic, and world-renowned neurosurgeons who treat children with Chiari Malformation have been the Melos” lifeline.
“To have such great care at our finger tips lifts a huge weight off of our shoulders as my husband and I seek out the very best care for our son in hopes that he can one day be cured of all of these illnesses,” Jessica said.
In 2012 the Melos joined the Boston Marathon Patient Partner Program, “Miles for Miracles,” as a way to turn Jameson's sometimes heartbreaking medical journey into something positive. The program provides a way to raise awareness for Jameson's condition while helping to raise funds for the world-class medical care that Children's Hospital provides.
In 2013, Jameson was paired with Shrewsbury resident Kim Auen, 37. Auen is the mother of two (Emma, 7, and Jack, 4) who joined Miles for Miracles in 2010 because, she said, she wanted to give back. Unfortunately she stopped short of finishing the marathon last year, but she will once again lace up her sneakers and take to the course on April 14. This time she will be joined by her husband, Scott, 46.
“I told Jessica that I would love to cross the finish line with Jameson (joining at the end) last year,” Kim said. “He was so excited, thinking that by us crossing the finish line he would be cured. But, because of the bombings, that never happened. When I couldn’t cross the finish line it was heart wrenching. I felt as if I let him down.”
After last year's marathon, Scott was determined to join Kim and run in 2014. The duo will run as Team Auen. This will be the first time that both Scott and Kim will train for a marathon together.
“Jameson is truly an inspiration,” Kim said. “When I run I think about everything he and the other children in the patient partner program have to endure, running is clearly the easy part.”
Jessica is both inspired and grateful that Team Auen will be running on behalf of her son and Children's Hospital.
“Scott and Kim are an amazing couple who [both] work fulltime while also raising two children. They are essentially putting their lives on hold to dedicate themselves to training and running to make a positive difference in the lives of kids like Jameson who rely so heavily upon the services of the Children's Hospital,” Jessica said. “We are so fortunate that they have come into our lives.”
The Melos and the Auens have forged a friendship which goes far beyond their patient partnership. The families have gathered together for dinners, birthday parties, and many road races.
Jameson, his parents, and his sister, Olivia, 9, look forward to the Boston Marathon and mile 26, where they will join up with the Auens and cross the finish line.
For more info on Sturge-Weber Syndrome, visit www.sturge-weber.org/.
For more information on Team Auen or to donate, visit http://www.milesformiracles.org/site/TR/Events/BostonMarathon?px=1003857&pg=personal&fr_id=1040.
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