Our Kids

Little kids

Nylah’s Story

Juvenile arthritis can occur in children as young as one year old. It can affect one joint or several joints. It can manifest itself in different ways but is invariably painful and distressing for both the child and the family. 

Nylah is 4 now. She was diagnosed with polyarticular arthritis when she was just 3 years old.  She has many joints affected  -  feet, knees, hips, back, neck, elbows, wrists, hands, jaw.  Her parents say she is the toughest person they know.  Her book about juvenile arthritis helps Nylah understand a little bit about what's happening to her body but, unfortunately, it doesn't stop the pain and sometimes she tells her parents "I cry because I have broken knees". 

Her mum took this video of Nylah to help raise awareness of the plight of children with arthritis.  

Xavier’s Story

Xavier is six years old. His mum told JAFA:

“Just before Xavier turned two he caught a virus.  Nothing new, only this time he didn’t get better.  Within six weeks he went from a little boy running around to a child who couldn’t even sit.  After numerous doctor visits, tests, scans and hospital rooms we were given a diagnosis - Juvenile Idiopathic Arthritis.  No one could tell us why, or how or what the future would hold.  Looking back, that was probably a good thing.

The past four years have been filled with infusions, injections, infections and hospital admissions.  The impact of his disease is felt every day - pain, physical limitation, fatigue, illness, the psychological impact of constant medical intervention, and missing out on many of the activities his friends enjoy.  His case is complex, yet there’s not much support for juvenile arthritis so, as his mum, I often feel I am in this alone.  It is exhausting, heartbreaking and frightening.  I try not to  think about what the future holds. Instead I try to make each day the best, most regular six year old day it can be”.

Xavier’s favourite games and toys are Transformers, Roblox, Lego and hide and seek. He loves the Goosebumps and Anh Do Weirdo books. He hopes to soon to be able to play soccer in a team with other kids.

middle sized kids

Laura’s Story

Laura lives with everyday pain, exhaustion, missed school, injections and the stigma of feeling different. She can’t dance or play the sports she loves but, when her fingers aren’t too sore, she plays the cello.

Laura is 10 years old. Her mum told JAFA Laura’s knee started hurting and swelling when she was eight.

“We were told it was ‘growing pains’ but, soon, she started crying when someone hugged her because her shoulders hurt. Then, her jaw became painful and sitting on the floor at school became difficult. Then, one morning, she went to pick up Lego off the floor but couldn’t bend down.  Nearly 12 months after her knee began hurting, Laura was finally diagnosed with polyarticular Juvenile Idiopathic Arthritis.

Laura is better now than she was but her arthritis has not responded well to medication and has spread to almost every joint in her body. Her treatment with the third and last biologic drug regularly prescribed for juvenile arthritis in Australia is not working well so we will need to begin an unknown journey of ‘what next’ and trialling some other drugs.   This won’t be easy. We live in a small town with no paediatric rheumatology services nearby so we drive a 1200k return trip to Sydney at least every three months for Laura’s check-ups. Luckily, we have family there to stay with but there is a financial and emotional burden attached to these trips.”

Daman’s Story

“I want people to know that arthritis is not limiting and there are ways around the pain”.

Daman is 13 and, already, he’s had juvenile arthritis for nearly 10 years. During those 10 years, he’s had multiple joint injections under general anaesthetic, years of painful subcutaneous injections, oral medications, and intravenous infusions of immune-suppressing drugs in hospital every few weeks.

The treatments help but he is never really free of pain.  Despite this when JAFA asked Daman if he would be willing to tell his story, this is what he said: “Hi, I am Daman, I have Juvenile Idiopathic Arthritis, most likely Psoriatic Arthritis. I was diagnosed at age 4 and I have arthritis in almost all of my joints. To have arthritis is painful, but it doesn’t mean you can’t do anything. If you get some medication from the awesome doctors, you can practically be like everyone else”.

Daman loves to be in the water, swimming, snorkelling and bodyboarding. He also loves fishing. When too sore to be active he spends endless hours reading or watching documentaries.

Alyanna’s Story

Alyanna is nearly nine. She was diagnosed with JIA when she was just one year old. About five years ago she developed uveitis, an inflammatory eye disease associated with JIA. Her mum told JAFA… “There’s alot to do:

• steroid drops in both eyes before school each morning

• four times a day of lubricating drops to hydrate her eyes,

• more drops after dinner to reduce the pressure inside her eyes

• heated towel packed for 2 minutes each eye every day.

And all that’s just for her uveitis. In addition, I inject her with methotrexate, her weekly immune- suppressing medication every Friday before school and we are currently sitting in the hospital room while she gets her monthly intravenous infusion of a different immune suppressant, infliximab.

It's very hard to see Alyanna go through all that she has to endure. She is stronger than I am that's for sure. And, despite all this, she’s a happy child who understands why she has to be especially careful in certain situations. We all look after Alyanna - what she can and can’t do - it's just our family’s way of life now.”

Alyanna loves colouring in, drawing and playing Roblox on her tablet and playing with her sister and Paco, the family dog.