Kaci’s fight with Juvenile Idiopathic Arthritis

Hi my name is Nikki maltby, i am fundraising for my daughter Kaci maltby. Kaci is 14 years old, she is battling juvenile idiopathic arthritis, which is an autoinflammatory disease that affects her joints.

JIA - juvenile idiopathic arthritis is a very common type of arthritis in children. It typically causes joint pain, inflammation, stiffness, redness and hot to touch. It mainly affects the larger joints, knees, elbows, ankles etc, but can affect any joint in the body.

Kaci has a type of juvenile arthritis called extended oligoarticular meaning that she has more than 4 joints affected after 6 months of diagnosis. Kaci currently has a lot of joints affected being both ankles, both knees, both elbows, both hands and fingers. Due to this disease, her immune system is weak and she struggles to fight off common illnesses such as the common cold or flu, this often leads to kaci being hospitalised. Kaci has to wear moon boots to help her ankles and splints to try and straighten her elbows.

Kaci was diagnosed in 2009 at the age of 4 years old when her life changed dramatically. Initially she had two joints affected being her left knee and left elbow over the years this has spread significantly to other joints.

Kaci also has uveitis which is inflammation of the eyes,uveitis occurs when the uvea (middle layer of the eyeball that includes the iris or coloured part of eye) becomes inflamed. If left untreated could lead to blindness, luckily kacis has always been detected early but she need daily steroid eye drops.

Having juvenile arthritis has meant kaci has needed to have a lot of extensive testing, such as, MRI's, CT scans X-rays, blood tests. The most severe being her frequent visits to theatre to have her joints injected with steroids and the synovial fluid drained from her joints to try and give her some relief. She has been on a number of different iv medications being, adalimumab, infliximab,tocilizumab, abatacept, she has also been on alot of subcutaneous injection being humira, enbrel, methotrexate. she has reacted to every treatment she been given. She is currently on toficitinib (oral medication) which is currently not working and she is now back on weekly injections of methotrexate (chemotherapy) this is having serious side affects. Kaci is now struggling to walk as her ankles are flaring really badly which has resulted in her needing to use a wheelchair.

we are now approaching 10 years of kaci suffering with this disease and she has never been in remission, her rheumatology team at the Rvi are now liaising with teams in America to try and get hold of a new medication that is not currently available to paediatrics on the NHS in the UK. She is also now under the cardiology department as she is having frequent episodes of high heart rate ranging from 180-250BPM leading her to have frequent ECG's and heart tracings done. This is really starting to affect kaci's mental health as the last few months have been a real struggle for her and us all as a family.

We are trying to raise awareness of juvenile arthritis as a lot of people are not aware that children can suffer with it or do not understand the seriousness of the condition. Kaci's secondary school st michaels are holding a fundraising event on the 5th July and wearing purple as well as a lot of other fundraising activities, we are also wanting to reach out and see if anyone would like to fundraise on kacis behalf or any local businesses within the north east that would love to kindly donate prizes, We can also provide the schools email should you require confirmation from them about the fundraiser.

Please help and donate to support Kaci and raise money to help with the cost of frequent hospital trips, specialist aids that will help Kaci with her independence and hopefully a family holiday to give Kaci a break away from the rigorous routines of hospital life and the daily pain she suffers with having arthritis.

on behalf of myself lee, Kaci,aiden,quinn & esma

Thankyou so much for reading kaci's story

Much love to you all xxx