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Xavier's story

23rd August 2019

Lynn’s 2-year-old son Xavier became ill with what turned out to be meningococcal septicaemia in January 1999. After a battle he survived, but the disease left him with severe and life-changing after-effects

Xavier's story

Now, aged 22, he attends a specialist college and the family is looking into supported living for him. Lynn, from Silverdale in Lancashire, tells their story here.

“My son Xavier was 2 years old and a beautiful blonde haired boy with a sunny personality. I’d returned from a day out shopping with my mum. He seemed to be a bit under the weather and looked a little pale, so I made sure he rested, had plenty of drinks and gave him some paracetamol."

“Later in the day I remember him saying ‘Mummy, my arms hurt’. He seemed to be very sleepy and not well, so I assumed it was a cold or something similar and gave him more paracetamol."

“I rang the local out of hours doctor who reassured me that I was doing the right thing and that there was no need for him to be seen at this time. I therefore put him to bed at the same time as his twin sister Inka."

“Later on I checked on him and realised he had vomited. I got him up to get him changed and realised he wasn’t responding to me talking to him. He couldn’t drink from his cup."

The glass test

“At this point I noticed a pin prick rash on his arms and I remembered the ‘glass test’ for meningitis. I pressed a glass on his arm and realised that the rash wasn’t disappearing. I quickly rang the out of hours service and the doctor there made me feel as if I was being paranoid and said there was no chance it could be meningitis."

“After speaking to my parents I rang the doctor again and eventually he agreed to see him at the local hospital if we brought him there."

“My dad drove us the half an hour to the hospital and by then Xavier was unresponsive and had developed the red blotchy rash on his arms and legs. I held him in the back of the car and knew that he might not survive."

Didn’t know if he would survive

“On arrival at the hospital he was surrounded by lots of doctors and nurses, who quickly gave him the antibiotics to try and counteract meningococcal septicaemia. They told me to ring my mum and get her there as quickly as possible, as they didn’t know whether he was going to survive."

“While they tried to stabilise him, a team came from Newcastle General Hospital to take him by ambulance back to Newcastle. My mum and I followed by car and I wondered if that would be the last time I would see him alive."

“He spent two weeks in Intensive Care covered in tubes, with a horrendous rash all over his body. We desperately wanted him to survive, and we sat and watched the screens, which constantly showed he had high pressure in his brain."

Long seizures

“After a few days he started to have long seizures. After days of scans and tests, we were told that there was damage to his brain and there was a chance he may have a learning disability."

“After two weeks in Intensive Care he was well enough to be transferred to a ward. When he woke up we realised that he couldn’t move, was blind and showed minimal response to people."

“We were moved into a private room from the main ward as reality was setting in and I couldn’t stop crying. We realised that he would never be able to speak, communicate, understand, eat or move again. So, the next two weeks we started to get used to feeding him by nasogastric tube, change him and push him in a wheelchair."

“My little boy had disappeared, to be replaced by a totally different child, who even cried differently and who I had to learn to love all over again."

“He spent three further weeks in Carlisle Hospital while he recovered. The wounds from his septicaemia rash healed, and we learnt to look after him."

Love him to bits

“Xavier is now 22 years old and we love him to bits and think he is gorgeous. He is about the size of an 8-year-old, so still retains his cuteness too!"

“He has had years of appointments, surgery and physiotherapy and fortunately only the occasional hospital admission. He also uses many different pieces of equipment, including a wheelchair, a feeding pump and suction. He has epilepsy, a visual impairment, a severe learning disability and spasticity in all four limbs."

“We wouldn’t be without him, but I sometimes wonder if it was the best thing for him that he survived as he has been through so much."

“He does have quality of life, if not in the conventional sense, as he has had amazing support from so many people over the years and went to an excellent school. He now attends a brilliant college where he is loved and cared for as we would wish."

“Meningitis has had a huge impact on all of us due to my son’s severe disabilities. He is at home during college holidays and the house is adapted for him. We are currently finding him supported living after a planned flat has fallen through."

“I’m pleased to see that there is so much more awareness around the different types of meningitis, symptoms and vaccination now.”