May 3, 2011
Adam Recke (NPC) will be featured on the Kathie Lee and Hoda program on Thursday, May 5, during the 10:00 hour. Adam is the 12-year-old son of Sean and Amy Recke of Pennsylvania. Tune in to NBC to see Adam on the "Everyone Has a Story" segment.
|The Marella family created Dana's Angels Research Trust after two of their children were diagnosed with |
Niemann Pick Type C
Greenwich residents Phil and Andrea Marella are fighting to find a cure for a rare genetic disease that afflicts two of their children. “We were shocked when we found out,” Andrea said of her children's diagnosis. “But we’ve seen great benefits from the research we’ve been able to fund. … We’re parents working to raise money for research, looking to save our own children. We want everything possible done.”
Dana and Andrew Marella have been diagnosed with Niemann-Pick Type C disease, often referred to as “children’s Alzheimer’s.” The family formed its own organization, Dana’s Angels Research Trust, to fight the disease. It causes progressive deterioration of the nervous system because of an interference in the body's ability to metabolize cholesterol. It leads to neurological problems that impact the ability to walk, talk and swallow. Typically children diagnosed with the disease rarely live past their early teens. Only 200 cases of Niemann-Pick Type C have been diagnosed in this country, two of whom are the Marella children.
Dana, a 17-year-old senior at Greenwich High School, was diagnosed at age 8. She could not receive a drug trial medication, known as Zavesca, until she was older. She now uses a wheelchair, can no longer speak and requires breathing treatments. Her brother Andrew, an 11-year-old at Central Middle School, was diagnosed at age 5 and started treatment at a younger age. Both children are already beating the odds.
“When [Dana] was diagnosed, we watched the steady deterioration. She began leaning on walls, then it was needing a walker and now she’s in a wheelchair,” said Andrea. “Andrew is a little miracle. We do attribute that to medications he was able to start earlier. There isn’t total approval of the medication yet, but we’re working with the drug companies on it.”
Dana's Angels Research Trust funds medical research, medical education and medical treatment to find a cure. “Whenever you have this situation with a rare disease, fundraising is family foundation oriented, so you don’t have larger organizations to rely on,” said Phil. “We’ve luckily been able to use 95 percent of what’s raised.” The foundation has collected more than $2 million since it started to fund research at five labs around the country.
The Marellas have not given up. “We have faith that our two kids will be fine,” said Andrea.
On May 20, the trust will hold its Annual Gala Benefit and Concert at the Palace Theatre in Stamford, featuring ‘60s singing group Frankie Valli and the Four Seasons. The 1960s rock-and-roll-themed event will be hosted by Kathie Lee and Frank Gifford. The Marellas said they have also recruited Regis and Joy Philbin for the silent auction. New York City’s famous Rao’s Italian restaurant will provide a pasta bar from 6 to 6:45 p.m.
Concert tickets are $45, $75 and $125 and are available online or at the theater box office. Gala tickets start at $300 and include the reception before the concert. Gala tickets are available on Dana’s Angels website.
But Adam has Niemann-Pick Type C, a rare and fatal neural degenerative disease most people have never heard of and for which there is no cure--- yet.
“It’s more than a rare disease, it’s an ultra rare disease,” said Adam's father, Sean, a technology teacher at Salisbury Middle School.
“To be considered a rare disease in the United States, the disease has to affect less than 200,000 people. Niemann-Pick affects less than 200 people in the U.S. and it only affects five families in Pennsylvania,” Recke said.
People with Niemann-Pick Type C are unable to metabolize cholesterol and other lipids properly within their cells. As a result, excessive amounts of cholesterol accumulate within the liver and spleen and excessive amounts of other lipids accumulate in the brain. Most children with the disease die before age 20.
When Recke's colleagues at Salisbury Middle School learned of his son's devastating disease, it spurred them to action.
In 2005, Matt Tobias, a social studies teacher at Salisbury Middle School, created the Race for Adam Foundation to help raise money to find a cure for Niemann-Pick Type C. On Saturday, May 7, the organization will hold the sixth annual Race for a Cure 5K run/walk at Lehigh Parkway in Allentown. The event will feature live music, food and raffles. Participants in the race will get a T-shirt that says "I believe," designed by Michelle Dang, a ninth-grader at Salisbury Middle School.
Scott Marshal, an instructional aide at Salisbury Middle School who is also a singer/songwriter, was inspired by Adam and wrote and recorded a song about him, titled “With Every New Day (I believe).”
“Adam is a really special kid—full of life, full of love, full of all the good things and all the wonderful things that make being a kid great,” Marshall said, tears brimming in his eyes.
While recording his album, Marshall mentioned the song to the producer. Management then told Marshall they wanted to release song. The song is available for 99 cents on iTunes and all proceeds benefit the Race for Adam Foundation.
“We really hope to raise awareness. If enough people buy it, it’ll chart on the Billboard charts. This could open doors for national exposure to Adam’s story.” Marshall said.
“It’s all about finding a cure,” he said.
Salisbury Middle School has rallied behind the Reckes, organizing various fundraisers over the years, often in the spirit of fun, with outrageous contests, such as the time some teachers slept outside and others shaved their heads. The school has posted numerous collection jars. In addition to the "I believe" T-shirt, they also sell two one that says “persevere” to raise money to find a cure for Niemann-Pick Type C.
It has not been an easy journey for Sean and his wife, Amy, and their two other children, Josh, 16, and Katie, 14, who live in Bethlehem Township. It took six years for Adam to be diagnosed, even though Sean and Amy knew right away that he was ill.
Adam was jaundiced when he was born, but doctors told the Reckes it was nothing to worry about and to expose Adam to sunlight. After taking Adam to the hospital the fourth time, the doctor finally drew blood. When the results came back, the Reckes were told to take Adam immediately to St. Christopher’s Hospital for Children in Philadelphia.
“His liver was so out of whack he almost died," said Sean Recke. "They didn’t tell us until after we left.”
At that time, Adam was misdiagnosed with neonatal hepatitis. From there, the Reckes kept taking Adam from hospital to hospital looking for answers. Finally, when Adam was 6, doctors performed a skin biopsy and confirmed the diagnosis of Niemann-Pick Type C.
With a mix of anger and sadness on his face, Recke recalled the day he and his wife were given the diagnosis. The doctor, with no bedside manner, told the couple to take Adam home because there was nothing he could do for them. He coldly told them there was no way the family could afford an experimental treatment. To make matters worse, the doctor could not find Adam’s medical paperwork, Recke recalled.
Although devastated, the Reckes did not give up hope. They researched the disease and found doctors with more knowledge about the disease, such as Dr. Marc Patterson, a pediatric neurologist at the Mayo Clinic, who has been trying to find a cure for the last six years.
Always looking for ways to help his son, Sean Recke attended a U.S. Food and Drug Administration panel on an experimental drug for Niemann-Pick Type C. Although approved in other countries, the FDA did not approve the drug due to the side effects--- diarrhea and bone growth issues.
Despite the lack of FDA approval, Adam takes this medication and does not suffer any side effects, Recke said.
Adam, now a sixth-grader at East Hills Middle School in Bethlehem, is doing well, his father said. Beaming with pride, he said Adam is popular and always smiling.
“He is living life to the fullest,” Recke said.
For more information, visit http://www.raceforadam.org/.
May 1, 2011
Tylor said goodbye to "his" bike today....Charlie Brown and the Great Pumpkin are moving on! Brad, aka Fat Head, is trading Ty's favorite bike in for a new one so we had to get some final pictures of Tylor and the Great Pumpkin....
|Fat Head and Tylor|
Thanks for the memories Brad, We Love Ya!!