Completing the 42km Rotorua marathon to raise Money for JIA

Jayah is the second oldest of Aj and Renee's 4 children. For 2 years since their daughter Jayah was 10 years old she had been suffering from severe fatigue, trouble walking, hair loss (alopecia) and pain in her joints. She had been off school and in and out of hospital for a condition that no one could explain.

She was up most nights in pain, and some days she couldn't even get out of bed. Over the past 6 months the condition worsened resulting in visible swollen joint, pain in her spine, neck, hips, knees, fingers, toes, and ankles. Jayah became so effected by the pain she couldn't walk, ride her bike, or do any of the things she once did. The pain became so bad for her, she was unable to participate in any of the sports she once played, and even affected her the ability to perform kapahaka which is the one thing that she loves most. Her attendance was so effected she even missed out on leadership opportunities in her school due to doctors not knowing what was wrong. Yet she continued to get on with thing with a smile.

After numerous ED visits over the past 4 months and intensive consult from Paediatric Consultants in Rotorua and Starship hospital in Auckland, Jayah was diagnosed with a with an Autoimmune disorder called Juvenile Idiopathic Arthritis. Jayah and her family were told that this autoimmune response is different in children in comparison to adults who suffer Rheumatoid Arthritis as JIA does not only attack the joints, but also the eyes, and organs as well. Jayah was started on high dose IV infusions of steroids to stop the attack on the body which in turn Jayah became very unwell. She was in hospital for just under 2 weeks as her body struggled to manage the new treatment.

Since having the new diagnosis, Jayah's life has changed. She struggles with the side effects of the medications she needs to take daily. She is now immuno-comprised from the medications which means she is at risk of catching illnesses that can make her more sick than others. She continues to wake up every morning in pain, but pushes through to go to school without complaint. Jayah has her good days and bad days. Some days she struggles with the life long condition she has to live with.

Jayahs parents want to help raise awareness for JIA as it is not often found and treated early. Jayah really struggled to understand the treatment and did not feel prepared for how sick she would become. Jayah wanted information in Te Reo Maori to better understand her condition from a young Maori rangatahi perspective and was unable to find any information she could relate too. Jayahs parents are wanting to raise awareness and funds to support Arthritis NZ and to develop a document in Te Reo Maori for tamariki and rangatahi suffering from JIA. Jayah wants to present this document to the Ministry of Health so it can be considered as an informative document for tamariki to better understand their experiences, medications and facts around JIA in Te Reo Maori. Jayahs strength and courage is one like no other that her family have seen. She is admired by her whanau and friends for her determination to not give up on life, and her patience to preserve no matter the outcome.