It’s been an overwhelming and emotional ride for twelve-year-old Alice Halinda – who recently learned she’s living with lupus.
Alice nearly died a few weeks ago and doctors say it’s because of the disease no one knew she had.
A few weeks ago the young girl began to feel weak, tired and had joint pains.
When the pain worsened, Alice’s family rushed her to emergency.
“That’s when things really started to go sour,” said Alice’s mother Angela Halinda.
Alice went into organ failure and Angela thought her daughter was going to die.
“I was a mess… I was terrified. It was gut-wrenching. I started to anticipate I was going to lose my daughter,” Angela said.
“I was given a 50/50 chance for her.”
Alice was put on a life support device that ended up saving her life and it was only after this ordeal that doctors realized the young girl had lupus.
University of Alberta rheumatology expert Dr. Janet Ellsworth says Alice became so sick because her body was unable to fight infection and that was likely due to the lupus.
“We suspect she had an infection and we do know that people who have lupus are not very good at fighting infections,” Ellsworth said.
Disease 'with a thousand faces'
Lupus is an autoimmune disease that can result in inflammations of tissue in different parts of the body including skin, muscles, joints, lungs, heart, kidneys and the brain.
It’s often referred to as the disease with a thousand faces because the symptoms can vary greatly from person to person.
“Instead of doing what the body is supposed to do, the immune system is supposed to be there to fight off infection and defend you from invasion of bacteria and viruses and in autoimmune disease what happens is the immune system gets retwigged and starts attacking your own tissues,” Ellsworth said.
Lupus is a life-long disease but one that is treatable.
“Most people who have lupus are able to be treated successfully and do very well and have essentially long and fairly normal lives,” she said.
Symptoms that may indicate someone has lupus are:
- Joint pain, swelling, redness, heat
- A red rash across upper cheeks and bridge of nose
- Extreme fatigue
- Chest pain
- Swelling of feet and legs
Click here to learn more about lupus.
Ellsworth says there are about two to three new cases of lupus in children per year in northern Alberta.
Many of the children are of Asian descent, like Alice.
“What I tell people is, it’s actually less common in people who are Caucasian and more common in every other ethnic group,” Ellsworth said.
“In the Edmonton area we have a lot of Asian families.”
Angela believes the reason why Alice is alive dates back to 2001 when the family made the decision to adopt and bring baby Alice home from China.
“If she had not come here from China and been adopted into Edmonton, she may not have survived when the lupus flared in her body,” Angela said.
“That’s not lost on me. It’s kind of a spiritual aspect.”
The family thanks Dr. Laurance Lequier for saving Alice’s life.
Lequir is western Canada’s expert in pediatric life support technology, training people from all over the world.
He was the one who put Alice on life support when she was rushed to emergency.
“Our extracaporal machine is essentially acting as the heart and lungs temporarily for the child,” Leqiuer said.
There were risks, and it could have been days or weeks before Alice would start to recover – if she was going to recover. It took just a few days, but Alice’s health did get better and now that she’s been diagnosed with lupus, the hope is daily medication will help keep the disease in check.
“After a few days we were able to show signs of improvement and we were able to slowly wean down our extracaporal support as her own heart and lungs started getting better and better,” Leqiuer said.
Alice is now resting at home, her health, slowly improving, as she cuddles with her new cat who the family has named Leqiuer after the doctor who saved Alice’s life.
“Edmonton is so lucky to have that program,” Angela said.
“It saved my daughter’s life.”
With files from Carmen Leibel
