Christmas Appeal 2023

On Christmas morning, 10-year-old Sfiyah became ill, her temperature spiked, her joints swelled, and she became limp. Her mum, Parvina, started to panic.  She had developed chicken pox, which for most children causes unpleasant itchy side effects but for Sfiyah who lives with Juvenile Idiopathic Arthritis, the virus caused serious complications. As each new spot appeared she became increasingly unwell. “Time felt like it stopped.” 

The presents they had been so excited to watch Sfiyah open were left lying on the floor as they rushed to the hospital.

"It felt deeply unfair for her to be in a hospital bed instead of at home enjoying the family being together and just being a kid, excited that Father Christmas had visited."

JIA has a devastating impact on 11,000 children in the UK. 

Sfiyah’s illness and diagnosis had a devastating blow on the lives of the whole family. Thankfully this was helped by the early intervention of Teapot Trust art therapy which allowed Sfiyah to communicate how she was feeling and bring some colour back into their lives. 

"Family life completely changed when Sfiyah first became unwell.  She used to have what I now know are flare-ups and she would feel terrible and sore for weeks at a time. It’s not an illness I expected any child to have. To see my youngest in agony and be powerless to ease her suffering broke my heart.

After she was diagnosed, the happy girl I knew shrank even more with the dread of regular injections which left her feeling horribly nauseous and completely drained of energy. The impact the diagnosis had on her mental health was unbearable. 

To hear your child say they don’t want to be here anymore - words can’t describe the anguish and fear it caused in me and my husband. She became more and more withdrawn and eventually refused to talk about how she was feeling. Our world collapsed.

It took a lot of time to just reflect on what was going on. I tried to hide my own emotional distress from Sfiyah as I didn’t want her to see me so worried. I had to give up work and become a full-time carer, as all the appointments were really difficult to manage and I wanted to be there for Syfia as much as possible - especially during the flare-ups. The toll hit my older sons too, they wanted to help and protect their sister but there was nothing they could do to take this away and they found that so difficult.  

   It felt like a wall had hit us but then she began art therapy with Teapot Trust.

 Jane, the Teapot Trust art therapist began to build confidence in Sfiyah which allowed her to start opening up about her feelings. Her body language changed, she became relaxed and happy again. She was part of a group session that introduced her to children battling the same condition and enduring the same stiffness, pain, and grueling treatment regime of tests and injections. For Sfiyah, it was a penny-drop moment when she realised it wasn’t just her and she wasn’t alone. Sfiyah started to wake up happy knowing she had art therapy later that day. That hour on a Wednesday became something we all looked forward to. We would have this 48-hour window where everything felt like it did before and there was a sense of the old family we had once been. She would even wake up on a Thursday happy to go to school even though her injections were the next day. 

Although JIA continues to pose challenges for Sfiyah, she now has an outlet with art which has made both her school and home life happier.  I can’t stress enough how essential it was for Sfiyah to have a way to communicate with us that wasn’t verbal. How she feels can be far too complex for a child to articulate. Sfiyah’s newfound ability to express herself through art therapy allowed her to share her feelings".

 

My little girl’s sparkle is back and I can't thank Teapot Trust enough.