Summer’s story – a mother’s perspective of life with JIA

Summer was 7 when she first complained of aches and pains in her legs. I put it down to growing pains which I remember having myself as a child. These pains went on for weeks and progressively became worse, so I made an appointment with our local GP who suggested she had a blood test.

I knew nothing about ‘arthritis’, apart from the fact that it affected older people. In one sentence our lives changed. One moment, Summer was a healthy 7 year old girl, the next I was filling out her disability card. Not really knowing how this would affect her, she continued to go to school. We would leave 15 minutes earlier to give Summer time to walk from the car to the school gates.  Summer needed help to walk. In fact, Summer needed help to get up, to wash and to dress. At one stage Summer could not walk at all. She spent much time away from school and at home in pain.  She also spent a lot of time in and out of hospital with many stays for days at a time.

Summer has Juvenile Idiopathic Polyarticular Arthritis. This meant that the medical profession could not identify where it came from and that most joints were affected. She was affected from her elbows and wrists to her hips, knees and ankles and even behind her eyes. Her joints were swollen and were causing excruciating pain. During a flare, Summer would sometimes lie on her back and refuse to move for fear of awakening the pain.

The medication didn’t seem to be effective and we would use any remedy that may make a difference. We lit scented candles, listened to soothing music and tapes, anything to take her mind off the pain. Sometimes it seemed that Summer lived with the pain and was accepting of it, other times it seemed like she could not cope anymore and tears would fall down her cheeks with no warning.

One evening I remember putting Summer’s younger brother to bed, and settling down her baby sister before organising Summer’s bed time routine of music, aromatherapy and candles. All seemed quite calm until 3 o’clock that morning. First I heard Summer’s groans – a normal sound which told me that she was in pain. I waited until her groans became more intense before prising myself from my slumber. At that point Sol woke up crying, after wetting his bed. I diverted and headed for Sol’s bedroom as his voice would without a doubt wake Shelena who was in a deep sleep after a breastfeed at 2.00am.

By this time both Sol and Summer were competing for attention, their cries getting louder and louder each competing to be the loudest.  In the end I cradled Sol in my arms whilst at the same time trying to change his wet night clothes and brought him to Summer’s room, then helped her with a dose of Peroxicam before gently rubbing her knees which was the wrong thing to do because it hurt.  Still half asleep and in the dark I tried to negotiate a tape, in doing so Baby Shelena woke up demanding a feed. This was clearly one of the worse nights of my life.

At one stage the Doctors suggested that I consider giving Summer a medication called Methotrexate, a drug that is recommended for people with cancer. Of course this frightened me and I struggled to find the connection between Summer’s illness and cancer. I still didn’t know how JIA was going to play out. Would Summer have to move school? Would she be able to walk? Would she spend most of her time in a wheelchair? Would she be able to play sport? 

The rest is history, as 9 years later; she was selected to play netball for England under 17s, then the England ‘a’ Team and then Superleague.

Summer is a JIA sensation and a role model to so many young people. Not every story will turn out like Summer’s, but she is living proof that dreams really do come true.

By Summer’s Mum Sherrie