Few of us enjoy the winter season, but Tracey Baxter and her daughter Devon are dreading it.
Devon is just 15 years old but has been diagnosed with psoriatic arthritis, a disease where joints around the body become inflamed and sore – combined with the skin condition psoriasis.
The diagnosis has only come in the last year, but Tracey, a mum of four and step mum to two, who lives in Chestnut Avenue, Spalding, has known from early on that something was seriously wrong with her youngest child.
“When she was at primary school her feet swelled up and she kept getting bug after bug and had a lot of time off school,” recalls Tracey.
Devon continued to get colds that would last a long time and experienced swelling in her feet and knees.
On one of many visits to the doctor’s, a blood test was carried out that flagged up a problem with Devon’s liver and her immune system.
Tracey said: “One morning at the end of October last year she couldn’t walk. Her body started swelling, and the doctor said her immune system was attacking her own body.”
Juvenile arthritis was diagnosed to begin with, but a paediatrician at the Pilgrim Hospital at Boston determined the exact problem.
By that time, Devon was in a wheelchair and the psoriasis had spread to her face.
She says: “I couldn’t open a bottle or a bag of crisps, and couldn’t carry an empty plate.”
Tracey had to put her daughter on the toilet, help her to bed, and says: “It was like looking after a 15-year-old baby. As a mum it tore my heart out. I have never seen a kid in such pain. It was constant, and that went on until she started having medication in March.”
Since having weekly injections – soon to be replaced by tablets – the condition has improved to such a degree that Devon now enjoys cake and biscuit decorating on good days.
However, she still has swelling and pain that prevent her attending the Sir John Gleed School on some days.
Tracey says: “I think there should be more understanding. It’s not the school’s fault, but because she’s having a lot of time off school they are threatening to fine me. They are being good at the minute, but they obviously want her in school, but sometimes she cannot walk.
“Doctors have said if she doesn’t keep on her medication she will be crippled up and in a wheelchair permanently.
“She’s got a positive attitude to it and that’s how she’s got through it and I am really proud of her.
“But when she gets a bug, because of her immune system, she gets it for two weeks and winter makes it worse, so we are both dreading the winter weather.