“The true kindness and respect we have received from staff at Meningitis Now has been of immeasurable comfort to us.”
Chris and Alison’s son Harry was diagnosed with meningococcal septicaemia in January 2013 when he was three months old. Due to the spread of sepsis Harry had to have his right leg amputated and has experienced significant mobility issues that led to a curvature of his spine.
It has been a long and difficult journey for Harry and his family. His Dad, Chris, tells us more about the day they realised he was very unwell and what happened next:
“Harry went to bed one night a healthy baby but when we woke early the following morning we found him in his cot looking pale and making a wheezing sound with short, shallow breaths. We picked him up and his body was cold and floppy. We knew something was seriously wrong.
“We bundled Harry into the car and rushed him to our local A&E who acted quickly. They immediately suspected meningitis and started antibiotics. We were told he was too ill to treat locally and that he would be transported by retrieval ambulance to the Evelina Children’s Hospital in London.
“At this stage there was still no rash and we weren’t quite able to believe that meningitis was the cause of his illness. He’d gone from happy and healthy to so desperately unwell in a matter of hours.
“The retrieval team transported Harry and us to London where they continued intensive treatment to try and save his life. We were informed at this stage that it was unlikely that Harry would survive the night and that we should call his wider family to come and say goodbye.
“By now a rash was appearing - nearly 15 hours after we’d first realised he was unwell. It was a dark red colour and spread across his legs, hands and nose."
Thankfully, Harry did make it through that night and as the days passed it became more likely that he would survive. Chris and Alison then received the news that Harry’s leg would require amputation and that he had an acquired brain injury due to the meningitis.
With the full weight of responsibility on their shoulders, Alison and Chris wondered how they would cope with looking after Harry, who was so physically and mentally changed by the disease. Chris says:
“It was then that Meningitis Now first made contact with us to introduce themselves and to offer their support should we need it.
“Time marched on; Harry learnt to walk on a prosthetic. We came to understand that his growth plates had been severely damaged by the meningococcal septicaemia and he would require ongoing hormone treatment.
“His spine developed a scoliosis, and his left leg suffered a growth deformity requiring numerous surgeries to try and correct it. Discussion remains ongoing about the viability of his left leg in the future. His right leg was further amputated, this time through the knee to enable greater walking function.
“We have learnt much about the hidden impacts of meningitis; migraines, behavioural changes, regular sickness, severe fatigue and the need to pace activity to ensure Harry can participate in life as fully as possible.
“Life for amputees is anything but straightforward, despite advances in prosthetic technology and rehabilitation medicine, and the simple, everyday tasks can be very challenging.
“Throughout Harry’s journey, Meningitis Now have been on hand to offer immense support to him and us as a wider family, including his younger brother, Oliver. We have enjoyed Family Day events, most recently at Birmingham’s Science Museum where we could share experiences with people who understand our journey and the difficulties we face.
Rebuilding Futures Fund
Chris and Alison applied for one of our Rebuilding Future Fund awards to support Harry with physiotherapy to help with his scoliosis and mobility issues. 12 initial sessions of physiotherapy were so successful that X-rays showed the curvature of Harry’s spine to be greatly improved. This in turn has helped with increased mobility and reduction in pain.
Chris said: “The medical record speaks for itself in terms of the improvements Harry has made, directly as a result of the physiotherapy Meningitis Now have funded. What it doesn’t capture, however, is the change his improved mobility has made to Harry’s mood, our wider family life and to his younger brother. Challenges remain but we face them with a little more hope and optimism than before and I can’t thank Meningitis Now enough for that.
“The true kindness and respect we have received from staff at Meningitis Now - in person at events or by phone and email when seeking support - has been of immeasurable comfort to us.
“Meningococcal septicaemia is a cruel and grossly unfair illness. We remain acutely aware of how lucky we are that Harry survived. The challenges in the years since he became unwell have been too numerous to mention but we have always tried to ensure Harry can live as full a life as possible. Meningitis Now has been instrumental in this mission and we are enormously grateful for their ongoing support.”
Here at Meningitis Now we remain committed to supporting those who have been affected by meningitis through our numerous support offerings. Our Rebuilding Futures Fund makes a vital difference to families living with the after-effects of meningitis and we are delighted to have supported Harry and his family. You can find out more about RFF here.