Written by Mum, Maisie Pugh about her son, Taylor, age 8.
“I am a mum of 3 boys, one who was diagnosed with JIA not so long ago. His name is Taylor and he is the most brave and strong young man you could meet. I am so proud to have him as my son ! I have witnessed and still continuing witnessing all the obstacles JIA throws at him.
“Taylor is now 8 years old and it was around the age of 5/6 he started complaining of his legs. At first, teachers, family and friends just put it down to growing pains and he was still a very active.
“Over time it got worse but it wasn’t regular. Taylor went to see his local GP who was slightly concerned and sent him for a blood test. The test came back with some inflammation (and other high numbers which we he no idea about) so he was referred to see a bone doctor in Oswestry.
“Whilst waiting for that appointment everything seem to settle so myself and dad wasn’t overly concerned and Taylor was once again playing football and running around in the garden with his dad. The bone doctor was happy to discharge Taylor and it was put down to something called “irritable hip”.
“Just before Taylor’s 7th birthday is where our world got turned upside down. Again Taylor was very tired legs hurting swollen knees and just looked and acted very run down. We just thought it’s was all the excitement and build up for his birthday and his party. He had several more blood test and his results where alarming. We was sent straight to our local hospital feeling very confused. Taylor stayed for a few days for tests but nothing was found and he was sent home. However, 2 days later he was having high fever at 3 o’clock in the morning on a regular basis swollen knees, ankles and stiffness in his hips. He was admitted straight back in to hospital for monitoring and further tests. Whilst Taylor was in hospital he couldn’t walk, I had to help him use the toilet whilst he was in bed or carry him to the toilet. As a parent , looking back i don’t know how i stayed strong and carried on. Taylor was so week and drained but he still had a smile on his face and still happy to join in as much as he could. We played so many board games together and watched lots of films. Even tho he wasnt pysically active he always kept his brain active.The doctor suspected JIA but wanted to rule all other possibilities out first.
“After we got Taylor home we tried to get back to normal, we all found this tough because we had no answers to what was going on. Taylor went back to school but had a modified time table and using a wheel chair. He came home one day saying “his friends asked of he had broken legs and he didn’t know what to say”.
“Eventually after all the test ruled out every other possibility and his swelling was still there. His amazing doctors diagnosed him with JIA and he had joint injections in both ankles and knees. Taylor has an amazing doctor and nurse who have been there for Taylor and us since the start !!!
“After the joint injections everything settled for a short amount of time, then he started to ‘flare’ again. Taylor’s doctor spoke to us about using a medication called methertrexate. Taylor took all of this in his stride and not letting it upset him. He understood that the medicine will make him better.
“Taylor is still on the methertrexate with regular 4 week bloods and they believe there may be some issues with his hips. We are currently waiting for his 4th MIR scan appointment to come through. Taylor is back playing football and running around on the play ground at school. He says “it hurts him after but it isn’t going to stop him having fun” and hes also “getting faster at running again“.
“I am so proud to say I am a JIA mum to this brave amazing warrior who always tries his very best and always continues to amaze me.”