Beaver family struggles with sisters' rare medical condition
By: Kristen Doerschner
Beaver County Times
Thursday November 25, 2010 10:16 PM
BEAVER — A family that has one child with a serious illness has plenty of struggles. The McGurk family has those struggles times two.
Joe and Danielle McGurk of Beaver have four children, two of whom have Dravet syndrome, a rare and incurable form of epilepsy.
For the McGurks, life has become a series of juggling acts as they rear their family, attempt to get their daughters the care they need and raise awareness about the illness.
Leah, 8, and Olivia, 5, suffer from Dravet, also known as severe myoclonic epilepsy in infancy. Their condition has left both girls frequently hospitalized, and finding the right care is difficult because only about 500 children in the United States have the condition, Danielle said.
Olivia's condition is more stable than her sister's, and her seizures are often not even visible except on an EKG; but her seizures can be more life-threatening when she does have them, Danielle said.
Leah, however, has seizures each day, including grand mal seizures, which can last days at a time. She also has autistic tendencies and cannot be left unattended.
The McGurk family is attempting to raise money to buy a seizure dog from Amazing Tales in Oxford, Pa., to be Leah's companion and to keep her from running off. The dog — which costs $7,000 — would be a rescue dog trained to work with Leah.
The dog would alert the family if Leah were having a seizure and stay with her. According to the Epilepsy Foundation of America, there are different types of seizure dogs. Most are service dogs that act as companions and guides. Some dogs can eventually learn to sense an oncoming seizure after being with their companions for a while, though little is understood about how the dogs are able to do so.
Danielle said they had considered getting a seizure dog for a while, but an incident a few months ago made the family realize it's something they really need. She said she went into the kitchen to make eggs while Leah was in the living room. Danielle said she could see Leah's feet from the kitchen, but noticed her daughter was suddenly on the floor. Danielle said she ran into the living room and found Leah turning blue and seizing.
A seizure dog would allow Leah some independence while still allowing her parents to have a watchful eye on her and some forewarning of an oncoming seizure. The dog would also help Leah to get around. Danielle said Leah has mobility issues, including a wide and unsteady gait, and the dog would help her move about more while keeping her from running off.
"This will become her best friend. Leah doesn't make friends. She doesn't talk. She doesn't act age-appropriate," Danielle said. "She can't make friends because of her condition."
The family must raise money not only for the dog, but the lodging, transportation and food expenses when they travel to get the dog and get trained in how to work with it.
Besides the dog, Danielle said, family members also started to participate in a program at Children's Hospital of Miami, where doctors have started a Dravet syndrome clinic. The trips are expensive, but the family hopes there will be a breakthrough that will help to improve the quality of life for Leah and Olivia.
Joe, 41, works for Verizon Wireless, and Danielle, 34, stays home and takes care of their children, which entails daily trips to see doctors and therapists.
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Danielle said she doesn't know how their other children, Lena, 14, and Chandler, 11, cope with their sister's illness, but they are very devoted to their sisters. She said it's been difficult for the whole family. She said the holidays can be particularly difficult in several ways. She said there have been holidays when either Leah or Olivia has been in the intensive-care unit of the hospital, and she and her husband have had to trade off being with their hospitalized child and the other kids.
"It's really hard as far as the family dynamic," Danielle said. "We try not to make plans far in advance, because we don't know what's going to happen."
Money is also very tight, which is an issue at Christmas when it comes to gifts, Danielle said. "I have to worry about their medication. I have to worry about special shoes, the special car seats, the co-pays, the things insurance doesn't pay for."
The typical life expectancy for someone with Dravet syndrome is 18 years, but Leah is already considered "fairly old" because of the severity of her illness and the many complications she's had, including a collapsing spinal column and periodically having to have a nerve stimulator (similar to a pacemaker) be replaced, Danielle said.
"My children are fighters, because they're still here. There's an adult with Dravet in Italy who is 40. We're hopeful. When I start thinking about it …," Danielle said, her voice trailing off.
"Everyone says it will get better," she said. "I just keep living on that. I cannot feel bad about this. This is their life, and we just have to make the best of it."
The family has also created a website for people to learn more about their daughters and about Dravet syndrome at www.sistersnseizures.com.
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Donations to the McGurk family can be made to the Sisters 'N Seizures Foundation at ESB Bank, 701 Corporation St., Beaver, PA 15009.
Dravet Syndrome
According to the Dravet Syndrome Foundation, children living with Dravet can have a wide range of symptoms and complications, including:
l A higher incidence of sudden unexplained death in epilepsy.
l Behavior and developmental delays.
l Movement and balance issues.
l Growth and nutrition issues.
l Sleeping difficulties.
l Chronic upper respiratory infections.
l Sensory integration disorders.
l Disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating).
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