Esmé's story

Esmé would wake up and spend most of the night crying out in pain, completely inconsolable.  We were at a loss. When her knees had swollen considerably,  she was finally referred to a paediatrician, who thankfully  recognised the symptoms of JIA.

We had never heard of JIA, we were in shock to start with, and  then we simply thought it was a case of taking the medicine and  getting back on track. We have since learned that this is a journey –  one where you are constantly reassessing how arthritis is affecting  your child’s life and adjusting to deal with it. 

Esmé started her treatment with steroids and methotrexate. It  seemed to work at first, with the inflammation subsiding. We noticed  for the first time that Esmé could do so much more.

Over a few months though the symptoms crept back in and Esmé’s  methotrexate was increased. Eventually the methotrexate was swapped  for a different medicine that she tolerates very well. She found taking the  medication incredibly difficult, and some of our most challenging times at  the start were actually about getting the medicine in Esmé rather than  dealing with the effects of the arthritis itself. And, of course, Esmé was too  young to understand why she was having to deal with all of these things.

Over time, Esmé has suffered with arthritis in both ankles, both knees, both wrists and her jaw, as well as developing psoriasis along the way. Without describing every stage of the disease so far for Esmé, what I would say is that from one rheumatology appointment to the next we are never sure what the verdict will be on whether the arthritis is ‘quiet’ or not.

One of the things that stands out from the time of being diagnosed is discovering Juvenile Arthritis Research and receiving the Little Box of Hope support pack. It showed us there was a network for those struggling with the new diagnosis, people that cared and understood how we felt, and it provided vital information. 

You shouldn’t underestimate the value of having a network of  people who are in a similar situation to you. JIA can be an isolating  disease, so if you get the opportunity to support a charity like  Juvenile Arthritis Research that provides that support to others,  please do so. Your contribution will make a huge difference.

At the moment we are wrestling with arthritis in her jaw. That  means more MRI scans, injections, blood tests and more of the  things Esmé really does not enjoy. But what we have learned so far is that together we will get through it. It is difficult to cope with practically: attending all of the medical appointments, staying on top of the medications, explaining to all those around us what is happening. But worse is the emotional side. Every birthday and Christmas since I can remember, Esmé’s only wish is that she didn’t have arthritis.

It breaks my heart that she wishes so hard for this, and that every Christmas she is disappointed as all the Christmas magic in the world is not enough to give her the one thing she wishes for every year.

Kate  Esmé’s mum