Mum’s warning after son, 10, hit by rare condition
APLYMOUTH mother whose little boy promised her he would fight, after being diagnosed with a rare condition, wants to warn other parents of the signs.
Paula Jones says her “mother’s instinct” told her something was wrong when her son Toby’s bottom lip turned purple. The 10-year-old was “getting over a cold” on March 21 when she noticed the unusual symptom.
Paula began to become increasingly worried when Toby “got worse”. His face was swollen and he was struggling to breathe. He also had a high temperature.
The 40-year-old mum-of-three took Toby to her GP and was told to go to Derriford Hospital immediately. There, Toby was diagnosed with a rare condition, Stevens-Johnson syndrome, which “presents itself as a cold or flu” at first, but is serious and needs immediate hospital treatment, according to the NHS.
Toby was taken to the High Dependency Unit at Derriford and Paula was told Toby was “getting worse”. She says she was told that doctors “did not know” if Toby would make it.
Toby, who Paula describes as a fighter, “promised” her he would get through it – and he is now recovering at home after coming out of hospital on March 26.
Paula said: “The doctor said, if he gets worse on the way to Derriford Hospital, we’d need to pull over and call 999. It was at that point I realised how serious it was. I went into parent overdrive.
“I got to the hospital and within 20 minutes he had several specialists with him. They diagnosed him with Stevens-Johnson syndrome.
“The scary thing is, it starts off like the flu or a cold. Then the body goes into overdrive, the immune system is attacking the body, but in the wrong way. It’s a one in a million condition – statistically. But Toby’s is even more rare because it was his own mycoplasma that caused it.”
Paula now wants to warn other parents to trust their instincts. Paula said: “I’d never heard of the condition Stevens-Johnson syndrome, it’s so rare. For Toby, it was his own body causing the skin reaction.
“We were in the children’s assessment unit, he was given oxygen as he was struggling to breathe. He came out in ulcerations, in his throat, mouth – any watery part of the body ulcerates with the condition.”
Paula said the condition can be “caused by medicines” in some patients but, in Toby’s case, his reaction was caused by an immune response to his own mycoplasma. Mycoplasma is a genus of bacteria that can cause infections in the body.
Paula also praised the staff at Derriford Hospital, who were “faultless from beginning to end”.
She said she cannot “thank them enough for their round-the-clock care” of her son and believes he “wouldn’t be here without them”.
She said: “He wanted to get home to watch the Argyle game, he loves football.
“The hospital consultant said Toby’s was the ‘most remarkable recovery’ from Stevens-Johnson syndrome that he had ever seen.”
Paula added: “I want to raise awareness for other parents – it is such a rare thing, but if speaking about it helps just one other family, that would be amazing.”