Chris & John Fernald
The Fernald Family
The Fernald family of Saco are, from left, Raima Fernald, John Irving, Chris Irving and Mike Fernald. |
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SACO - Chris Irving can still eat finger foods and drink out of his own cup, but his older brother, John Irving, can no longer do anything on his own.
The two now rely on their parents and a string of caregivers to do everything for them, from feeding them meals to bathing them and getting them dressed every day.
"It's not easy. They need care day and night," their mother, Raima Fernald said. "I can never get away from it."
The brothers, 36 and 38, respectively, are in the late stages of Huntington's disease, a genetic, neurological disorder that is as devastating as it is rare. Untreatable and eventually fatal, Huntington's affects only about 30,000 people in the United States, making it difficult for patients and their loved ones to find care settings that cater specifically to the needs of people with the disease, according to the Huntington's Disease Society of America.
In addition, it's hard for people with Huntington's to get Social Security disability, or to have institutional or home-care needs completely covered by Medicare. That's one reason Raima and her husband, Mike Fernald, the brothers' stepfather, met with Gov. Paul LePage last week. The couple was seeking help with the costs of caring for their sons in their Saco home.
"The fact is that we're at the end of our rope and we needed help yesterday," Mike Fernald said this week.
That's also why, earlier this year, U.S. Sen. Kirsten Gillibrand, D- New York, introduced the Huntington's disease Parity Act of 2011. According to the Huntington's Society, the bill, if passed, would make it easier for people with the disease to receive Social Security disability benefits and Medicare coverage, which would dramatically improve their lives.
Huntington's is a disease that people inherit from their parents. The child of someone with Huntington's has a 50 percent chance of having the mutated gene that causes the disease, according to the National Institutes of Health.
Unfortunately for Chris and John Irving, their father didn't know he was a carrier of the Huntington's gene until he developed symptoms and was eventually diagnosed. Their father died at age 45.
Of the three boys Raima Fernald had with her ex-husband, two of them developed Huntington's, Chris and John, while the third, Nicholas, did not.
If a child does not inherit the gene, he or she will not develop the disease and cannot pass it on to subsequent generations. However, a person who inherits the gene will always develop the disease, according to the NIH.
Early symptoms of Huntington's include mood swings, depression, irritability and trouble learning new things, remembering facts or making decisions. As the disease progresses, patients lose control of voluntary movements, have severely diminished thinking and reasoning abilities and also suffer from diminished speech.
In the late stages of the disease a patient becomes totally dependent on others for their care. At this stage, a person with Huntington's can no longer walk and will be unable to speak. When a person with Huntington's dies, it's typically from complications of the disease, such as pneumonia, and not from the disease itself, according to the NIH.
Although the disease is not fully understood, it is known that sufferers have a defect on the short arm of chromosome 4 and produce abnormal versions of the huntingtin protein, according to the NIH. A physician named George Huntington first discovered the disease in 1872. Then in1993 scientists found the gene that causes the disease. Although researchers are working on a cure, the only relief for patients is from a variety of medications, including anti-depressants and painkillers.
Mike and Raima Fernald are now caring for their sons at home because they feel the brothers are getting better and cheaper care than they received when both were living in a group home run by Lutheran Social Services in Portland.
In fact, according to the Fernalds, it cost the state of Maine $692,000 for an out-of-state placement for Chris Irving for 2=C2=BDyears and it cost $830,400 to care for both boys at the Lutheran Services group home during a period of three years.
After the Fernalds removed their sons from the group home, the amount of caregiver hours MaineCare paid for was reduced from 168 hours a week each to 118. In addition, Raima Fernald had to quit her job in order to have her sons under her personal care.
This angered Mike Fernald, who first contacted LePage by letter to tell him of his frustrations. In that letter, Fernald said, "The state is saving a huge sum of money by having families care for their loved ones at home, but the services are cut dramatically."
In their fight to get more help with caring for their sons at home, the Fernalds have the support of Wendy Weise, a hospice social worker, and Jack Comart, an advocate with Maine Equal Justice Partners.
In a letter addressed to LePage on behalf of the Fernalds', Weise said, "I urge you to listen carefully to what (they) have to say. They are the 'experts' when it comes to providing cost-effective, compassionate, home-based care for a family member whose needs are so great."
During their meeting with LePage last week, according to Mike Fernald, the governor asked Mary Mayhew, the new commissioner of the Department of Health and Human Services, which oversees MaineCare, to look into the Fernalds' situation and, if possible, to offer them the extra help they need in caring for their sons.
On Wednesday, Sarah Stewart, spokeswoman for MaineCare, said that the level of care a person receives depends on eligibility and where the patient falls in the spectrum of services the agency provides.
She doesn't know how many Mainers suffer from Huntington's and said MaineCare does not track its beneficiaries by the specific disability they suffer from.
In addition, Stewart could not say whether more people with Huntington's in Maine are cared for at home, like the Fernalds are now doing, or whether they are institutionalized.
Also, neither the Maine Department of Health and Human Services nor the Maine Center for Disease Control keep statistics on the number of people suffering from Huntington's statewide.
Knowing what Huntington's looks like now, Raima Fernald said, she can see that her ex-husband was suffering from the early stages of the disease throughout their marriage. She said he was unable to keep a job and made bad decisions that ultimately led to their divorce.
Fernald also said she can now see that both her older sons were also suffering from Huntington's even in their late teens.
"They were both very irresponsible and unable to focus and they couldn't concentrate on work, just like their father," she said. In fact, neither of her sons finished high school. Both dropped out of Bonny Eagle High School in 11th grade, Fernald said.
She said Chris and John didn't get tested for Huntington's until their early 20s and that Chris Irving took the news very hard.
"He cried a lot and was deeply affected, but I think even then Johnny didn't understand the impact of the diagnosis," Fernald said. "He kind of took the news like it was no big deal."
Both Irvings wanted to serve in the military and both tried, but Chris Irving ended up going AWOL and John Irving was only able to spend two years in the Army Reserve. Both also had trouble keeping steady jobs. In addition, John Irving has been homeless and in and out of jail for much of his adult life.
After being diagnosed with Huntington's, the brothers decided together to go live on the beach in Thailand. Both were arrested when their visas lapsed and John Irving ended up spending three months in a Thai jail.
All this time, Raima and Mike Fernald were at their wit's end, trying to figure out what to do with their sons. When Chris Irving returned from Thailand, he was placed at the Kindred Rehabilitation Center in Massachusetts.
When John Irving returned, he began having psychotic episodes and spent a couple years at various psychiatric hospitals. Eventually, the Fernalds were able to get their sons placed at the Lutheran Social Services group home.
However, after John Irving was taken to the hospital in January with severe dehydration, the Fernalds decided their sons would be better off at home. John was placed in hospice care at that time and Chris was placed in hospice at the beginning of April.
The parents are aware that the end is near for their sons and they want them to have the best quality of life possible before they die.
That's why Mike Fernald will continue to give Chris rides on his ATV as long as he's able and his wife will keep washing and re-washing John's favorite stuffed animal.
"I just want these boys to be treated like heroes for what they've gone through," Mike Fernald said.
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