|
Brothers to the core
Life of boy, 7, may depend on bone marrow of his 5 year old sibling.
By SUSAN JORSTAD
Community News Writer
"I feel excited!" exclaimed 7-year-old Shawn Dippre, characteristic of his cheery disposition as he awaits a bone marrow transplant.
He needs it to head off a debilitating disease that is stealing control of his mind and body.
Shawn of East Stroudsburg, has Metachromatic Leukodystrophy, known in the medical world as a metabolic storage disease.
The inherited disease causes his body to store sulfatides, killing the white blood cells in his brain. It is attacking his motor skills, his nervous system and his intellectual functioning.
There is no cure.
But a successful bone marrow transplant could slow the progression of the disease, explains his mother, Lisa Jackson. She and Shawn's 5-year-old brother, Dale Dippre, were tested; Dale's was a perfect match and he will undergo surgery at Children's Hospital in Philadelphia to donate some of his healthy bone marrow.
Until a few years ago, Shawn had a seemingly normal, healthy life.
His symptoms went undiagnosed when they first began to appear at about 4 years of age, but his teachers at Headstart, where Shawn attended preschool, noticed signs that something wasn't right.
From left, Lisa Jackson and her three sons, Aaron Jackson (half-brother), 10, Shawn, 7, Dale Dippre, 5, (the "perfect match" donor) and step-father Clinton Rouck, Jr.
Susan Jorstad/Community News
"His fine motor skills weren't any good," explains Clinton Rouck, Jr., Jackson's fiance and Shawn's stepfather. Shawn's birthfather died several years ago of a heart attack."They didn't diagnose him till last year," says his mother. "They ran test after test. Finally, they did an MRI."
A week later, Lisa received the news that the disorder was centered in Shawn' s brain, not his spine, as doctors originally thought.
"The doctors are saying he could make it or he couldn't make it. He could get better or… he may be in that wheelchair the rest of his life," says Lisa. "If his body accepts the transplant, the disease will stop doing damage to his brain. I'd rather try to give it to him, try to save his life. If it works, he could live till he's 35 years old. He won't improve, but he won't get worse."
"The (healthy) bone marrow will stop his organs from shutting down," explains Rouck.Shawn's motor skills have rapidly regressed since the Summer of 2001, when he would ride his bike with older brother Aaron.
Then last winter, he collapsed while out walking with his mother.
"That's when we realized something was definitely wrong, and they had me take him to a neurologist," she says.
By last summer, he required training wheels again, and then became unable to ride his bike at all.
"It's hard, seeing him the way he is, every day," says Lisa. "I'm with him every day. We put gates up outside his room so he won't get up and fall down the steps, and we put a baby monitor in his room."
"It just hurts, to see him going downhill," says Rouck softly.
The degenerative illness has affected the whole family, especially Shawn's brothers who remember days filled with the rough-housing outdoors typical of a bunch of active boys.
"I feel sad… we used to play tag and stuff – hide-and-seek, ride bikes," says older brother Aaron Jackson, 10. "Now he can't do these things."
"See? He wants to run and play with them," says Rouck, as he guides Shawn back into the living room. "But we have to be right with him in case he would fall."
Just as frustrating as Shawn's deteriorating physical ability is the decline in his mental awareness.
"Shawn was in second grade, but they took him back to kindergarten," explains Rouck.
Because of his mounting physical and mental limitations, Shawn was transferred from a regular classroom setting at J.M. Hill to the district's elementary Life Skills class at Bushkill Elementary for the 2002-03 school year.
It was there that his teachers urged Shawn's mother to seek further medical testing.
"Shawn has deteriorated a great deal," says his teacher, Lisa Madison. "His mood has stayed the same – always happy; wants to learn. But he has become frustrated because he would walk down the hall and fal. He would forget things. He would get his lunch box and could not remember how to get food from it. He was losing control of his bodily functions.
"He knew something was wrong, but he didn't cry, act out, get mad… . We knew something was majorly wrong and pushed for (his mother) to get more testing."
Madison has been providing homebound instruction for Shawn since January, when he stopped attending school because of his fragile immune system.
She has observed a marked decline in that timespan in Shawn's ability to do simple tasks, such as printing his name.
"He can't stay task oriented. Even now, he will put a pencil in his mouth or up his nose – things the doctor said not to reprimand him for, because he has no control," says Madison.
The disease is causing decreased muscle tone, frequent falls, speech slurring, and difficulty eating.
A physical therapist works with Shawn at his home twice each week, and Shawn's parents work with him daily on his exercises.
"One of the things the doctors want to see, is us to try to work with him to build his muscles back, to get the strength in his legs," says Rouck.
He and Shawn demonstrate a few of the stretching exercises they do. Then Rouck tosses a pack of gum onto the floor.
"Can you pick that up?" he asks Shawn. "No, don't touch the table. Bend over…that's right."
"As soon as he has his bone marrow transplant, if his body accepts it, they might send him back to school," says Lisa, who is home with Shawn during the day. "I know he misses it – being around his classmates."
Shawn returned once to visit his Bushkill class for a Valentine's Day party on Feb. 13 — this time in his wheelchair.
During the weeks prior to the transplant, Shawn will receive chemotherapy to kill the old bone marrow and prepare his body for the transplant.
The transplant date has not yet been scheduled, but will be sometime this month, says Lisa. She and Rouck will take turns staying at the Ronald McDonald House during the weeks of Shawn's recovery.
The family just recently was able to purchase a 1988 Dodge Ram van that allows them to transport the family and Shawn's wheelchair, which is being rented through their health insurance.
They have MedPlus, but don't yet know how much of their medical expenses will be covered, says Rouck.
While they await a transplant date, the family is planning a short road trip to Bangor, Maine, to visit Lisa's mother, who hasn't seen her daughter in nine years.
"She hasn't ever met Shawn or Dale," says Lisa. "It was Clint's idea. We decided to go in case (after the transplant) it's too late."
Readers or members of the business community who would like to help defray the costs of transportation and medical expenses can do so by sending donations marked "for Shawn Dippre" to: Joey's Eagle Support Group, c/o Nellie Grampp, 77 Lake of the Pines, East Stroudsburg, PA
18302
.
|
