But you still need to activate your account.
PEMBROKE – Cyrus Morgan’s world is packed with playtime.
In the kindergarten classroom at Pembroke Elementary School, he’s the one the other youngsters are drawn to. He shares, laughs and, at 51/2 years old, is the perfect playmate.
But he can’t tell his parents how he spends his days.
The boy bubbles over with favorite activities at both school and home, but he can’t talk.
Born with Rubinstein-Taybi syndrome, a rare disorder with pronounced physical characteristics, Cyrus faces a lifetime of limits to his growth and development. Fewer than 1,000 cases worldwide have been diagnosed since two Cincinnati doctors, for whom the syndrome is named, first identified the disorder in 1963.
The condition is so rare, say Cyrus’ parents, Ron and Nima Morgan, that there has never been any significant funding for its research.
That’s why Nima Morgan has spent each evening since summer sending out more than 300 letters to family, friends and colleagues.
If the Morgans and 60 other families across the country together can raise $420,000 by Nov. 23, a Columbia University doctor who received the 2000 Nobel Prize in medicine will undertake three years of research for RTS.
The full cost for the research by Dr. Eric Kandel will be $1.2 million, but he is willing to start the work based on the first year’s funding. His research in the molecular process of long-term memory has focused primarily on the same protein that is deficient in RTS patients.
Already, communities and contacts across Washington County have responded to the Morgans’ call by giving about $4,000 toward their efforts.
Nima works as a podiatrist for Eastport Health Care in Eastport, and drives regularly to a satellite office in Machias. Ron has his own construction business with four employees, and works on job sites from Calais to Machias.
Nima’s and Ron’s own families have contributed another $5,000 toward the goal.
Across the country, the combined fund raising among all the families with afflicted children recently topped $200,000, so the Morgans believe raising another $230,000 in the next two weeks is possible.
In a world filled with thousands of good causes, Nima Morgan’s pitch letter goes like this: “I am writing to share with you a little science and a whole lot of hope and promise … Our children with RTS face a lifetime of challenges, including medical problems that can severely compromise their thinking, breathing, eating, talking and walking.”
The Morgans, who also have a healthy 2-year-old daughter, Alex, have adjusted to raising Cyrus.
“He will probably be with us at home his entire life,” Nima Morgan said last week at the family’s house in Pembroke, off U.S. Route 1.
Thursday, when the Morgans were interviewed, was their ninth wedding anniversary. Ron, 34, grew up in Pembroke, graduated from Washington Academy in 1988 and has extended family in the area.
Nima, 35, moved Down East 10 years ago, taking her position in Eastport after finishing a residency in Baltimore.
With her parents and sister living in Cleveland, Nima has coped as a mother of a special needs child largely on her own. Somehow, notes Pembroke Elementary Principal Paula Smith, she finds time to volunteer with the school’s parent-teacher association.
The family has had the good fortune of working with three steady caregivers over Cyrus’ five years.
But now the family’s need is money, not for themselves, but for the bigger cause of research that would help families worldwide touched by Rubinstein-Taybi syndrome.
If the cross-country group of involved families fails to reach its $420,000 goal by Nov. 23, all donations will be returned.
Those born with Rubinstein-Taybi syndrome have short stature, retardation and developmental delay, similar facial features and broad thumbs and toes, often crooked.
Eighty-five percent of children with the syndrome are nonverbal, as Cyrus is. Still, he is a communicator. He uses sign language, and all of his classmates are learning sign language, too.
He is popular even with older pupils. On the playground his favorite game is tag. The first- and second-graders enjoy engaging him in the chase.
He is particularly social because, at 3, he made use of the speech and physical therapy services provided by the Washington County Children’s Program in Machias. Last year at 4, he attended Pembroke’s half-day kindergarten for 4-year-olds.
The children’s program services ended when Cyrus turned 5, but one of the agency’s caseworkers will remain assigned to him until he is 21.
The average age at the time of diagnosis for RTS is 15 months, as there are no medical tests that aid specifically in the diagnosis.
The Morgans learned of Cyrus’ condition within a month of his birth on Feb. 18, 1999.
“Our lives came to a halt,” his mother said.
He was born at Calais Regional Hospital, where Dr. Gautam Popli remains his pediatrician. Popli came to Calais six years ago from New York City.
The doctor had seen one other child with RTS as a medical student in India, Nima Morgan said, so he quickly picked up on the possibility. He made appointments for Cyrus to see a genetics specialist in Bangor, who confirmed the syndrome.
Newborns with RTS tend to have a string of early medical complications, as Cyrus did. There were surgeries amid constant care. On each of his first four birthdays, Cyrus was in the hospital for something different.
Only on his last birthday was he at home.
He didn’t crawl until 26 months, and he didn’t walk until 28 months.
“Dr. Popli has truly been there for us,” Nima Morgan said.
Since starting in kindergarten, Cyrus has learned tasks such as hanging up his coat and emptying his lunch tray.
“I go check on him when he’s not looking,” his mother said, “to see what he’s achieving when he’s with the other kids.”
The cause of RTS is unknown. Neither a chromosome abnormality nor a definite genetic pattern has been identified in the condition. Doctors believe it is possible the condition occurs when there is a spontaneous mutation in a gene that is too small to be detected by chromosome analysis.
Isolated Down East, the Morgans believe they are the only family in Maine with an RTS child. In July 2003, they traveled with Cyrus to Cincinnati, where a conference every five years brings together afflicted families.
All the things that the Morgans thought were unique to Cyrus were actually common to all the children. They all love television, animals, chocolate and spinning – they don’t get dizzy.
“It doesn’t take a lot to make Cyrus happy,” Ron Morgan said. “He’s a very content child.”
His parents are content, too. They have a lifetime of caregiving ahead, but feel blessed.
“Cyrus has taught us so much,” said his father. “We appreciate life more.”
To make a contribution to the Morgans’ efforts, send checks payable to Kandel RTS Proposal at Morgan Family RTS Fundraiser, P.O. Box 211, Eastport 04631. All donations will be acknowledged, and all money will be returned if the group of families falls short of its fund-raising goal of $420,000 by Nov. 23. More information on the disorder may be found at the Web site www.rubinstein-taybi.org.
Cyrus Morgan, a kindergartner at Pembroke Elementary School, gets a little restless while waiting for a classroom computer to reboot. Holding him and redirecting his attention to the computer monitor is teacher’s aide Madonna Lewis. Cyrus has a rare cognitive and anatomical disorder called Rubinstein-Taybi syndrome.
Comments
comments for this post are closed