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Little Adrie embracing life in all its glory

By Don Fennell

Published 1:52 PDT, Fri September 10, 2021

Last Updated: 3:04 PDT, Fri September 10, 2021

Faith and medical advances give Richmond child renewed hope for future

Adrie heartily embraces every opportunity life offers—from playing with her sister London and going to the playground to biking and the beach. And, at age five, the Richmond child has just started her first days of school.

“I think she will enjoy Kindergarten and developing friendships,” her mom, Selina Lam, says hopefully. “She’s also requested to join soccer for the fall and as long as she enjoys it, we want to give her the opportunity.”

But for Adrie, the path hasn’t been easy. She’s had feeding issues since birth and was not meeting a lot of the expected milestones in her first year. She often threw up her formula and was not gaining weight. At the age of one doctors diagnosed her with NF1 (the better known reference to neurofibromatosis), a genetic disorder characterized by the development of multiple non-cancerous tumours of the nerves and skin, and areas of abnormal skin colour. Yet with seemingly little hope she pulled through and was able to finally breathe on her own again.

“We never connected those as indicators of her NF1 being severe,” explained Lam, who also has the genetic disorder, but like most only has coffee-coloured patches on her skin. “I never knew there were chances of having tumours that can grow along your nerve and seriously affect quality of life.”

The tumours have caused Adrie’s spine to be severely curved. Last year, she underwent halo traction and rod surgery and is due for another rod replacement surgery in October. Thanks to recent technology, the rod can be extended magnetically without her having to endure further surgery, but she will still need rod replacement every 18 months until her teen years. Lam hopes there will be further medical advances in the meantime, explaining that without continued funding and research Adrie will face many additional surgeries.

As devoted Christians, Lam and her family draw strength from their faith.

“We know that God is looking after our family and He has his plan for us to learn and grow,” Lam says. “We have a strong support group from our church who has prayed for us and Adrie throughout our journey. Being Christians allows us to put our fear in His hands. What we need to do is try our best to live a joyful life.”

Lam is also grateful to the dedicated health workers who have supported Adrie and her family throughout the challenging journey.

“Adrie’s tumours also affected her swallowing,” Lam explains. “She was silently choking on her food and it was going into her lungs. It led her to the ICU and she stayed incubated for three weeks at a year-and-a-half. After one month she pulled through and was able to breath on her own again. However, her medical team advised she should not be eating orally due to the risk of choking and facing another lung infection. So for a year she was only fed through a tube.”

With her trial medication proving effective, Adrie was again allowed to eat pureed food in small portions. She was always eager to attend occupational therapy sessions where she learned to chew and swallow. During the two years her overall health and weight improved and she gained a full ability to eat orally without a gastronomy tube. The tube was removed this June and she discovered a love of food—notably her dad’s smoked ribs, tacos, and bubble tea.

“(Adrie’s) speech is a little behind for her age, but I believe she is determined enough to catch up with her peers,” says Lam, adding that determination is only possible because she had the opportunity to be on trial medication. That trial may end this year since Adrie’s health has proven to be stable, but she will still need to be closely monitored to ensure there is no growth of the tumours which tend to grow during puberty.

While unfailingly supportive, doctors—such as Dr. Juliette Hukin, a neuro-oncologist at BC Children’s Hospital—have always been honest about Adrie’s condition, Lam says. Rather than surgeries to remove Adrie’s non-cancerous tumours affecting her eating and growth, Dr. Hukin worked with the oncology board for three months to get Adrie onto the trial medication to shrink the tumours. At the time, Lam says, BC Children’s Hospital did not have any other children participating in the trial.

“We can tell (Dr. Hukin) always thinks of Adrie and (spends time) researching the best treatment for her,” Lam says appreciatively. “We often receive calls from her after work hours to update us with her plans.”

“And Dr. Ravi Ghag, her orthopaedic surgeon, is always on the lookout for the best treatment for her scoliosis, especially due to her age and size. We have trusted him on her journey and know that he will make the best choices for Adrie.”

Further testament to Adrie’s inner strength is how she responded to having to stay at BC Children’s Hospital for a month due to severe scoliosis. She had six pins drilled to the crown of her head with a halo and was forced to stay in a wheelchair or walker carrying one third of her weight to stretch her back before surgery.

“She didn’t complain once of any pain and not being able to go home,” Lam marvels. “She made friends with all the nurses in the ward and enjoyed all of the activities child life specialists hosted.”

The successful treatment for Adrie, and children facing similar challenges, is made possible largely through the care and generosity of others. One of the ways many show their support is through BC Children’s Hospital Foundation Dream Lottery, which sold out early this year with record sales. 

The Dream Lottery supports research initiatives that lead to innovative discoveries and treatments, which in turn help experts advance their quest to conquer childhood illnesses.

At BC Children’s Hospital, more than 1,000 researchers continually push the boundaries of what’s possible. Lottery funds help accelerate the pace of turning discoveries into life-saving treatments, allowing more kids to get back to being kids again.

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