#KidsCantWait: Ziyaad’s Journey

The First Signs

Ziyaad was born on January 2, 2017, and he is now 8 years old. He has 2 older siblings, a sister, Nureen age 18, and a brother Fayaaz, age 16. He also has a cat, named Leo. Ziyaad enjoys being outdoors, swimming, biking and hiking. He is in grade 2 and attends James Cameron School in Maple Ridge, BC.

During the summer of ‘23, Ziyaad had just completed Kindergarten, and our family was visiting New York City and Disney World. On the morning of our last day in New York, Ziyaad woke up with a golf ball-sized swelling on his left knee. He had been complaining about leg pain the previous day but we didn’t think too much of it, as we had done a lot of walking around the city. My husband and I decided to take him to the emergency department. The doctors ran some blood tests as they initially suspected an infection. The blood tests proved inconclusive and they determined that he had most probably sustained a repeated injury to his knee. They recommended that we follow up with our paediatrician when we returned home. Ziyaad had a wonderful visit to Disney World despite having to be wheeled around in a stroller and struggling with a painful knee.

Shortly after we returned home, Ziyaad woke up with a stiff neck. Our initial response was to treat it as muscular tension. The stiffness did not resolve and coincidentally our appointment with our paediatrician came up. Our paediatrician suspected that Ziyaad had an ocular motor condition and referred us to a Paediatric Ophthalmologist and also sent a requisition to BC Children’s Hospital for an MRI.

Getting a Diagnosis

It was in the Ophthalmologist’s office that the words Juvenile Idiopathic Arthritis (JIA) were first used to describe Ziyaad’s condition. The Ophthalmologist diagnosed him with Uveitis. An MRI and referral to pediatric rheumatology 2 weeks later confirmed that Ziyaad had JIA, affecting his neck, spine, knees and eyes.

This day will be imprinted in our memories forever. I had never felt so vulnerable or afraid before. A child’s illness is something no parent is ever prepared for. JIA is usually not the first diagnosis that comes up. Ziyaads dad, Uzair, is a Family Doctor with 20 years of experience, and JIA was the furthest thing from his mind. So I don’t blame the ER doctors or any other doctors involved in his care for the delayed diagnosis. JIA is sneaky that way!

Getting a diagnosis scared us but also gave us a roadmap and plan. The medical attention and care that Ziyaad received at BC Children’s Hospital was outstanding.

Finding Support and Moving Forward

The staff at BC Children’s referred us to Cassie + Friends. In May 2024, we attended the Cassie + Friends Family Day Conference. This was an absolutely amazing experience for us. The conference was so well organized from start to finish we were kept engaged, learning about other children’s challenging yet triumphant experiences with JIA, optimal dietary habits, new drugs and research. There was a kids club which Ziyaad still raves about now. We met and connected with other families. A truly memorable experience, and we can’t wait until the next one.

The advice that I would give other parents facing this challenge is: Never underestimate how resilient your child is. With a lot of love and encouragement, your child can overcome any challenge. Stay strong, love deep and take one step at a time. Don’t be afraid to ask for help.