One local woman is stepping into the spotlight this holiday season to thank the people who helped her through a difficult time in her life.
To an outsider looking in, there is little indication today that 28-year-old Rebecca Gingell was bedridden for four years and told that she might never walk again.
Gingell, who lives in Tsawwassen, has a rare genetic condition - pseudohypoparathyroidism (PHP) Type 1B - that, in basic terms, causes a calcium deficiency in the body. It is so rare that Gingell, granddaughter of late MLA Fred Gingell, is one of only about 100 people in Canada living with the condition; and combined with a secondary bone disease, Gingell is the first recorded case of her particular medical condition.
Calcium affects more than just the bones. A lack of calcium in the body can affect muscles, including the heart, mood and anxiety level, coordination, balance, sight and even a person's IQ.
Gingell wasn't diagnosed with PHP until she was 15, but she had a variety of issues throughout childhood.
"Life was pretty hard up till then," she said.
She was anxious a lot and had issues with bright lights and loud sounds, she was uncoordinated and had problems with sports and other activities.
"As a child, I was very fearful," she said. "Everything from Disney movies to firecrackers at Halloween to a new situation was a scary event. I had to try twice as hard at school to get extraordinarily average grades. I had trouble keeping up with my friends in every way. I was happy but very shy."
Gingell said her mom, Lois Gingell, "always kind of felt that something was a little something wrong but we weren't quite sure what. I wasn't actually even aware that she was worried until I was 14."
At that time, Gingell said, the family broached their concerns with the family doctor. However, all the issues seemed unconnected.
A diagnosis came four months later, just after her 15th birthday. Gingell was studying for a French exam at school when her heart went into tetany, a muscle spasm caused by her low level of calcium, and she passed out. Gingell said she was unaware she had lost consciousness and woke up sitting at a desk with her face in her binder.
"I left the class and cleaned myself up and promptly wrote a French exam," she said.
She later told her mother, a registered nurse, what happened and was taken to B.C. Children's Hospital.
She was diagnosed with PHP and treatment began.
Despite the diagnosis and treatment, Gingell still struggled with health problems throughout her teens and by 21 she began having a lot of pain.
There are a of number of parathyroid diseases that cause low calcium but they are treated differently. With the initial treatment, Gingell's calcium level did not rise enough and her parathyroid level remained high and, as a result, her body started leeching calcium out of her bones until that supply ran out as well.
"My calcium became so low it was immeasurable," she said.
Her bones became inflamed, causing immense pain.
In the spring of 2007, Gingell was referred to Dr. David Thompson, an endocrinologist at Vancouver General Hospital.
"It was an extraordinarily scary time for me. We didn't know what was happening."
The pain was getting worse.
Gingell said Thompson confirmed her diagnosis and a plan was put into place to begin the right treatment.
"We left his office with a sigh of relief that day," she said. "We knew instinctively that we were in good hands and I would be well cared for. That feeling is still with me seven years later."
Gingell's journey, however, was far from over. She was in and out of hospital over the next few years and started gaining weight. Due to the inflammation in her bones, Gingell began to swell, gaining 100 pounds over three-and-a-half years.
"It's like when you sprain your ankle or fracture a bone, you swell," she said.
"It was essentially like I had fractured my whole body and, as a result, my body began to swell."
In April 2010, Gingell was admitted for what would become her longest stint in the hospital - 17 months, one of the longest stays ever at VGH.
During that time, she said, doctors, nurses, hospital staff and volunteers became her family.
"Everyone from the PIC team to the people who brought the meal trays to the housekeepers and porters kept my spirits up and encouraged me," she said.
Nurses would stop by her room to catch up, paint her nails and help distract her from the pain, and hospital volunteers would often come into her room just to chat and share a laugh.
"They shared glimpses of their personal lives and, as a result, they broadened my rather narrow one. They made my family and I feel supported and secure in an insecure situation. They were cheerful and buoyed me up when life seemed rather dismal."
Her doctors, Thompson and hospitalist Dr. David Wilson, as well as physiotherapist Sue Kwan and Dr. Annabel Mead, a member of VGH's complex pain team, and others worked tirelessly and through many complications to help Gingell regain her health.
In September 2011, as Gingell was nearing the end of her hospital stay, she stood for the first time in more than two years, and even while celebrating the success, she was told she might never be able to walk independently again.
Gingell, however, had other ideas and remained determined to start walking.
She was discharged from VGH on Sept. 20, 2011 and two days later she took her first step.
"It was a day of intoxicating joy, hope and new beginnings," she said.
Gingell continued her rehabilitation at GF Strong Rehabilitation Centre, where she was an outpatient for more than eight months.
Today, Gingell is working at St. David's Anglican Church in Tsawwassen where she is the director of children and young family ministry. She has also been studying psychology at Trinity Western University but has had to take a break from her education from time to time due to her health.
After her long hospitalization, Gingell and her family began looking for ways to give back to the hospital.
This year, Gingell became the face of the VGH and UBC Hospital Foundation's annual Angel fundraiser. The event invites members of the public to make a donation to the foundation and dedicate angel ornaments to doctors, nurses, friends or family who have made a difference in their life.
