Meningitis in your words

Benjamin Hopper's story

  • Location: England
  • Categories: Meningococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Benjamin Hopper

‘Meningitis’... What is it? What does it do? What are the repercussions of it?

I’m not proud to admit it but all of the above are questions that I could not answer until three years ago. Strangely enough I should potentially know the answers to these questions as I studied and graduated with a sports science degree and I’m currently employed in the medical devices field. I do remember being vaccinated against meningitis during my university days however I was not aware of the different types of meningitis and the implications of this disease.

That was until February / March 2008, just six weeks after my son was born. We just knew that something was not right with our new born son Benjamin. Crying for discomfort, pale skin, pained movement, soaring temperatures and very fine skin blotches. Fortunately my wife was a senior nurse at the local hospital and her understanding of meningitis was obviously far greater than the average. Laura’s knowledge of the meningitis disease certainly helped with protocols required to test for meningitis and to take action quickly. Something that was very unfamiliar territory to me and probably most people. The typical glass testing was not working with our situation as the meningitis B disease had not really kicked into full effect.

"My wife and I felt like our world had been completely turned upside down"

Timing was of the essence now as we knew that Benjamin needed be looked over by a professional. As the doctors at the local hospital’s A&E department were examining Benjamin the situation worsened with the meningitis B disease spreading rapidly and really starting to show it’s aggression with the typical signs and symptoms. Immediate IV intervention was now required and the next 24 – 48 hours would be critical.

As an individual who possibly likes to be in control of situations, this was certainly a position I felt powerless to control. Both my wife and I felt like our world had been completely turned upside down. We were solely reliant on the interventional antibiotics available to help fight this disease for Benjamin

The next week was completely nail biting. Regular IV therapy with antibiotics and constant checkups with the consultant. Fortunately, we were very lucky as Benjamin has progressed on to be a healthy little boy and so far (three years later) has no lasting effects of the meningitis B disease. I strongly believe that this is credited to my wife’s speedy thinking and the fantastic care we received at our local NHS Hospital.

It wasn’t until after we appeared to be ‘out of the woods’ that I sat back and thought ‘how bad could this have been’? This is the point at which my investigations led me to the real effects of meningitis B, brain damage, loss of limbs, and even death. More importantly how we don’t have a vaccine to protect people from this shocking disease.

I knew at this stage that I wanted to help raise awareness of this disease and help support the research into finding a vaccine for meningitis B. If we could find a breakthrough then less people would have to endure the process that Benjamin, Laura and I went through. And in most cases have to come to terms with a far more horrific outcome.

I was invited to join the MRF team during their visit to one of their sponsored projects at the National Institute for Biological Standards and Control (NIBSC). The core aim of this visit was to show fundraisers of MRF where some of the monies are used to help research a vaccine for meningitis B. The day was broken down into two elements: an educational section covering all of the recent studies required to investigate potential vaccines and a tour of the laboratories to highlight the tedious processes necessary to support these theories and studies.

Whilst I have a science degree I certainly don’t profess to be a microbiologist. However the educational presentations were explained in a simple way that I could understand – the basic principles that we are very close to finding an antibody which could stimulate the different protein structures around the meningococcal cells. Thus allowing a major breakthrough with the potential for a vaccine against some forms of meningitis B. The greater excitement for me was to find that one major pharmaceutical company is very close to licensing this vaccine. However there are still large hurdles to jump over and the fundraising activities really do help support the research to overcome these challenges.

The tour really helped me to understand how rigorous the testing parameters are for all of the clinical research studies. Different levels of testing for certain outcomes and obviously different control factors for protection of staff. One of the largest ‘eye openers’ for me on the tour was the level of appreciation for the cost of all the apparatus required to complete this research. A particular device we were looking at cost in the region of £500,000.

The NIBSC is generally funded by the government with internal projects funded by pharmaceutical companies and charities such as MRF. With the current economic climate in place I applaud the staff at these sites for ensuring that a continuum of essential funding is recognised and sourced for future pioneering research.

Overall I really enjoyed the visit as these types of events really do help to reinforce the value of our fundraising monies. Supporting projects really does help to try and build a better tomorrow.

Jonathan Hopper
December 2011