She was sitting in her parked car one day when she suddenly realised that she could not move. She was conscious and her brain was functioning, but the rest of her body was paralysed. This was the start of five terrifying years for 52-year-old Sheree Baron who also became crippled at one point, going from a travelling businesswoman to one who lived at the doctor’s office and could not be left alone.
Today Baron can be seen walking the streets of Georgetown with her cute dog in a pouch and many may think she just loves her dog. She does, but she also suffers from a rare disease which can temporarily paralyze her at a flash; the dog, Izzy, helps to restore her mobility.
Izzy’s body warmth is important, hence she is strapped to her chest for most of her waking hours; the symptoms of her illness are triggered by her body not being sufficiently warm.
“So what Izzy does is lick me. She starts to lick me and she just gets licking really hard until I start to come back round again. The warmth and the movement are all I need… [if not for Izzy] a person would have to do it,” Baron told the Sunday Stabroek during an interview, as bright-eyed Izzy looked on intently.
Even though she has suffered from debilitating pain, nausea and most frighteningly has been paralysed for hours, Baron still considers herself lucky since most persons with mitochondrial disease are wheelchair bound and cannot eat food.
After suffering for years in Canada with the symptoms becoming more aggressive with age, Baron now spends most her time in Guyana where the warm weather and chemical-free food have given her a second lease on life. So severe is her reaction to cold that after her first visit to this newspaper’s office Baron had difficulty getting up and leaving; the room was air-conditioned. On her second visit, the unit had to be turned off to facilitate the interview.
Cold air, loud noises, bright lights, strong smells, sitting too long, standing too long, sleeping too long (especially in a cool room) all trigger her attacks.
According to http://www.mitoaction. org/mito-faq mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. It affects about 1 in 2,000 people, is progressive and has no cure. The website explained that mitochondria are tiny organelles found in almost every cell in the body. They are known as the “powerhouse of the cell.” They are responsible for creating more than 90% of cellular energy. They are necessary in the body to sustain life and support growth. They are composed of tiny packages of enzymes that turn nutrients into cellular energy. Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die there is organ failure.
‘Terrifying’
While Baron said she grew up as a sickly child—she left Guyana for Canada at the age of seven—she described what she has suffered for the last five years as “absolutely terrifying.” For about two years she could not walk and only left home to see doctors.
Those visits were ordeals because her condition was difficult to diagnose. Many of the physicians thought she was having a mental meltdown and suggested she see a psychologist. Had she not been a strong individual who was certain of what was happening to her Baron would have been on medication that has nothing to do with her condition and she shudders to think what could have happened.
When she asked a psychologist whom she had visited why he was prescribing medication after a 20-minute interview, his response was, “Well they can’t find anything wrong with you so it has to be psychological and so I said thank you very much I would get another opinion.”
It got worse. “I fought for three years. Doctors were prejudiced against me. I remembered the one bad occasion was when we went to the hospital because I was paralysed and I was treated very badly in the hospital… They thought that I was on drugs or that I was maybe drunk …and until the doctor actually saw me the process was most humiliating,” she said.
She had been rushed to the hospital because the paralysis was so severe, her daughter dialed 911. The experience at the hospital was so extreme it scared her and she cried on her way home because until that date she had never known prejudice, yet she was experiencing prejudice because of her disability.
It was also her lucky break as the doctor who saw her indicated that she had a very rare condition and that it would be difficult for it to be diagnosed.
Baron admitted that she has been suffering for years but not to such an extent. Then, five years ago, one night she went to bed with a headache and the next morning she woke up with what felt like a hangover even though she is not a drinker. “But that’s how it appeared I was staggering and appeared to be hung over…,” she said.
She recalled dropping her daughter and neighbour to first aid classes and walking her daughter in before struggling back to the car.
“… I became paralysed. Just completely paralysed… I was in the driver’s seat, not driving or anything, completely paralysed,” she said. She was in the parking lot of an organization that was teaching first aid and a paramedic ambulance with a driver was right beside the car but she couldn’t even ask for help.
“It was terrifying, absolutely terrifying and then everything started to release after about 20 minutes and that was the start.|”
The longest her temporary paralysis has lasted was 12 hours.
“That time I was at home and I was doing something and I didn’t feel well and I lay down… I was paralysed in my bed and I couldn’t tell anyone because everybody thought I was sleeping; it was night,” she recalled.
After that experience it started happening frequently.
Izzy
Because she could not be left alone it was decided that she should get a dog. Izzy was owned by her neighbours who were looking for a home for the dog.
“She and I seemed to fall in love,” she said of the dog and that was even before she realized that the dog was anticipating her attacks before she did.
Izzy is a 12-year-old Maltese Mix and at the time Baron was sick and confined to home or using a wheelchair to go out.
“We became friends and she soon learned to identify before I would have an attack or if I became paralyzed she would lick at my wrists until I was able to move again.”
She said this simple action helps people around her to realize she is in trouble and not just asleep. She is unable to talk or move during these attacks, but the action of the dog can save her life. In extremely cold situations, Baron stops breathing. Izzy has been trained and is now a medical service dog. Her specific duties are to keep Baron warm, keep her neurological system in balance and if she becomes paralysed, lick her wrists until she can move again.
‘Not genetic’
Baron had her own business, but had to curtail work and travel because of her illness.
It was only last summer that she was properly diagnosed and because of the rarity of the disease the cause has not been established. Baron still considers herself lucky as her case is very mild.
However, she said, “The beauty is that they were able to say it is not genetic so my children are not carrying this gene… that was very important.”
Though she was sickly while growing up, Baron said, she had a very strong energetic personality, “you would never know that I was always sick, but I was always sick. It was just a constant this thing or that thing and you would never know what it was.”
Baron has been living in Guyana since 2013 with the assistance of Nigel and Cathy Hughes. She had worked for them previously when they were opening Side Walk Café. She contacted Cathy and told her she needed a safe warm place to be and an invitation was extended for her to come to Guyana.
Last year she went home to Canada in July but got very sick again and became distraught.
She told her sister she could handle the pain but not the muscle pain and constant itching of her feet and she was advised to try coconut oil.
“I said I would try anything and you know coconut oil changed my body, changed my life…,” she said, adding that she still uses it. Before the coconut oil her muscles were swollen and out of shape but now they are back to normal. The coconut oil and the heat of Guyana combined has given her an opportunity to walk again.
Describing her years of suffering from the condition Baron said she would pass out. “It is like a horror movie. I would eat and just fall asleep and hit my head on the table and for years this was happening and no one knew what was happening and then I started having seizures and then they went away,” she recalled.
“In my teens in school I was passing out all over the place and they thought I was having a nervous breakdown,” she said.
But through it all Baron in her own words is “lucky…incredibly lucky. First of all I have had an incredible exciting life. I mean I have done everything. I swam. I ran. I use to do races and play tennis. I have had a full exciting life and still do. I have two children.” Baron added that even though she is not married at present, she was for some 32 years.
