Though the chapter of their son Dylan James, or DJ's, life that they had been living with for the past three years - his battle with Tay-Sachs Disease - ended last week with his passing, neither Brian nor Sherri Manning are giving up what they say was their son's mission in life - to educate people and raise awareness about Tay-Sachs Disease.
"Education and awareness is the key," said Brian Manning on Tuesday, a day after Dylan's funeral. "A simple blood test determines if you're a carrier."
Certainly the Mannings, who live in Atglen and have another son, Brady, had no idea they were carriers of the genetic - and fatal - disease that works by attacking the central nervous system when Sherri gave birth to Dylan in November 2001, but they quickly embraced that was his mission. "There's a reason he was born on Thanksgiving Day," said Sherri.
Dylan was 17 months old when he was diagnosed, a diagnosis they said squelched the common myth that it was a Jewish disease - Brian and Sherri are both Catholic and of Irish-French Canadian descent.
One of every 250 people is a carrier and only 20 to 30 children are affected a year. "There's just not enough knowledge out there," said Brian.
Though Brian called the initial diagnosis "a crushing blow," he added that they didn't want that hampering what Dylan's mission was. "We welcomed people into our homes and lives to get his message out to the world," said Brian.
Brian added that he saw Dylan's message as being two-fold: to educate people about Tay-Sachs Disease in the hopes of saving other children down the line and not to take life for granted.
"His innocence made people realize how fragile life is," said Brian. "People would tell me that they would hold Dylan and feel at peace, then go home and hold their own children."
The Mannings plan to continue their efforts through the DJ Manning Foundation, which they formed shortly after Dylan's diagnosis. "My mother works at a daycare and they were raising money so I could stop working and be at home with Dylan," said Sherri. "It became larger than that."
Though the couple initially hoped to find a cure, they say now they don't think there will be a cure and that treatment is the key.
"It starts in the uterus," explained Sherri. "When you realize they're not reaching normal goals, the damage is already done."
The Mannings were virtually on their own when it came to Dylan's care and treatment of his symptoms.
"There is no such thing as a Tay-Sachs doctor," said Sherri. "There are just not enough cases ... they're not knowledgeable."
Along that line, they hope to educate doctors "so they can educate their patients" and work as advocates for families of children with Tay-Sachs.
A simple blood test would tell prospective parents whether or not they carry the gene. "If they know they're a carrier, other steps can be taken to take Tay-Sachs out of the equation," said Brian.
In the case of their son Brady's birth, the couple did in vitro fertilization after a pre-genetic determination of the embryo was done.
"There are other ways ... like adoption," said Brian, adding he and Sherri were lucky enough to be able to go the route they went.
Sherri added that they want to make sure the last four and a half years "haven't been for nothing ... I don't want any child to have to go through that."
"When Dylan was alive, he was the face of Tay-Sachs," said Sherri.
According to Sherri, Dylan had been able to see early on - "he'd play with toys, pick up Cherios." Because he had been born a little premature, doctors gave Dylan extra time when he wasn't meeting normal milestones. That, Sherri believes, delayed a diagnosis.
(Another symptom of Tay-Sachs that Dylan had was extreme startleness "when a door would close or a dish would break... that never went away," said Sherri.)
Brian described the effects of Tay-Sachs on the central nervous system as the central nervous system being a strand of light switches - "the Tay-Sachs comes along and turns off each switch one by one," he said.
When visiting her mother's daycare, Sherri told the children Dylan was "special" rather than sick out of concern of their reaction. "I think kids knew that he was special ... they were drawn to him," she said.
The Mannings also took Dylan to such events as a Leann Rimes concert - Rimes even autographed a picture "To My Angel, Dylan", Boston Red Sox games and a host of other activities. "We would think, 'would Dylan enjoy this, sure he would,'" said Brian.
According to the Mannings, Dylan told them when the end was coming - in the past few months, he was taking less and less food. And, though they had a Do Not Hospitalize order, they did take him to the doctor about gas pains because, as Sherri said, "it was a comfort issue."
And, even with that, they wound up treating it with methods of their own devising - charcoal - when the doctor could offer no suggestions.
Sherri said she is now considering nursing school, in part to educate a whole other realm of medical professionals.
Though the one word he said clearly was "God" a couple of years ago and a form of "Mom", the Mannings said that on the day he died - Wednesday, Aug. 2 - Dylan said "ouch."
"That summed up the last three years," said Sherri.
For more information on Dylan and the DJ Manning Foundation, go to www.djsfoundation.org.
Dylan James "DJ" Manning, 4, died Wednesday, Aug. 2, 2006, at his home after a heroic life-long battle with Tay-Sachs Disease, a fatal genetic neurological disease.
Born in Reading on Thanksgiving Day, Nov. 22, 2001, he was the son of Brian R. and Sharon "Sherri" Godwin Manning.
He enjoyed listening to music, massages and therapy, swimming in his hot tub and he treasured the companionship of his dog, Madison.
He was a member of St. Joseph's Church in Coatesville and the Red Sox Kids' Nation Fan Club.
In addition to his parents, he is survived by a brother, Brady Dylan; maternal grandparents, James and Andrea "Roni" Guidas Goldwin of Coatesville; paternal grandparents, C. Daniel "Pete" and Maureen Manning Hayes of Exton; great-grandmothers, Jeannette Manning Sherman of Wilmette, Ill., Marie Guidas of Branchdale and Leona Hayes of Downingtown; aunts, uncles, cousins and friends.
He was preceded in death by paternal grandfather, Robert Manning and great-grandparents Andrew Guidas, Helen and Gerard Deslaurier and John Manning.
A funeral Mass was celebrated on Monday, Aug. 7, at Ss. Philip and James Church, Route 30, Exton.
Interment followed in Philadelphia Memorial Park, Frazer.
Arrangements were by Maclean-Chamberlain Funeral Home, Wagontown.
Memorial contributions may be made to DJ's Foundation, P.O. Box 1444, Exton, Pa. 19341; or visit www.djsfoundation.org.