Maya’s Story (9 years old)

Maya’s Story

Maya Thomas is a bright and bubbly 9 year old girl; she has a wonderful imagination and tells great stories. She is happiest when she’s with family and friends and just loves to play dance and sing. Unlike most other children Maya can get very frustrated when she is stiff and her bones will not work, meaning that she cannot keep up with the other kids. Maya has a condition called Juvenile Idiopathic Arthritis and this is very hard for her as she has to put up with aches and pains almost every single day.

Maya walks with a limp and her fingers wrists ankles don’t work as well; this can make her day to day activities very hard. Maya is sometimes also affected in many other joints like her neck, jaw spine hips and knees which are hard for a child to cope with when they are aching. She spends a lot of time in the hospital with appointments and tests, and on top of that every week has 3 injections at home along with painkillers and medication to help with the nausea. Some of the medication Maya takes makes her feel very sick and she often misses school or social events as she recovers at home.

A lot of people with Arthritis regardless of age will say that it feels likes glass rubbing between there joints. This is due to the joints becoming inflamed or joint damage which is very painful and make it extremely hard to do everyday things. Because you cannot “See” Arthritis it may seem confusing to some people that one day for example Maya can be very active, play and seem perfectly fine and others she will be slow and unable to keep up with her friends or even stand for very long, she can also become very grumpy and withdrawn. Arthritis is tricky because you cannot see from the outside what’s happening on the inside and that’s where the body is feeling dull aches and pain.

Juvenile Arthritis can happen at any time in a child’s life. There is no actual cause as to why any child gets this disease and there is no known cure, although a good percentage of kids will grow out of it in their teens and others will go on to have it for most of their life. Maya was diagnosed at 4 years old but before that was a super active happy go lucky girl who loved to do the monkey bars, ride her bike and run and play with her friends. She was hardly ever sick so when she started getting ill everything happened very quickly and meant test after test after test, this was a very tough time for Maya and everyone who is part of her life. Maya spent a lot of time in hospital from then onwards and has had many cortisone injections in different joints as well as a range of medications so she has had to be very brave indeed.

Kids with Arthritis may need all sorts of aids to help them including splints , special footwear , crutches etc , Maya uses all of these things she sleeps in a hospital bed and has a wheel chair she nick names “Wheelie” which she uses when her legs are not working so well. Other great aids are heat – cool packs oils and creams and radox baths etc.

Maya moved to Westport with her parents in 2010 and they have been overwhelmed with the wonderful support from all the people in the town and who are involved in her care including a variety of specialists, Physio Therapists , Arthritis New Zealand , Kids with Arthritis New Zealand “

KWANZ” including the support groups connected to the foundation , and South School where they have shown tremendous compassion and have accessed every resource available to help with Maya schooling years . Mayas parents Lisa and Dean cannot express enough how vital it is to have the support of your family, friends and support organizations . Maya still has a road to travel with her Arthritis journey and they all play such a tremendous role. Maya is such a strong independent little girl and we will work together to not let her disease not hold her back in any way possible throughout her life.