Tommy's incredible Daddy (Nick) and 3 close friends (Kurt Russell, Matt Trump and Aaron Cozens) will be running a mile for every day of our precious little boys life over 3 days, the length of time he was in hospital for. This is a staggering 178 miles which equates to just under 2 and a half marathons a day for 3 consecutive days. All funds raised will go to the Paediatric Intensive Care Unit (PICU) at Bristol Children's hospital to support families and other children through what is likely to be the scariest and hardest time of their lives.

Tommy was the most gorgeous, loved and cherished little boy that brought so much love and joy to everyone that was lucky enough to meet him. He was becoming the cheekiest little chap and one things for sure that he had his mummy and daddy wrapped around his little finger. He truly was our everything and everything we do now will be done with him in mind, just like it would have been had he not being cruelly taken from us far too soon.

Late in the evening of Wednesday 5th November our lives tragically changed forever. Our gorgeous little boy Tommy went from falling asleep in bed with his mummy, so she could keep an eye on him as he had a viral infection, to just an hour later her waking up to him having a seizure next to her. An ambulance was called immediately and a crew arrived within minutes, within 15 minutes we were at Musgrove Park hospital where another team of medical professionals were awaiting Tommy’s arrival.

Tommy still had not stopped fitting so they were doing everything possible to stop this and find the cause. Unfortunately, nothing was working and after about an hour it was decided that Tommy needed to be put to sleep to stop the seizure and allow his little body to rest. He was incubated which meant that a tube was breathing for him and he was essentially in a coma.

Since it was still unknown what caused the seizure, it was decided that after Tommy had a CT scan he needed more specialist care and he was transported by a specialist ambulance to the PICU ward at Bristol Children’s Hospital. They sorted Tommy with a bed, one on one care with lovely nurses, constant observation and they had started to investigate what they believed was going wrong. In the afternoon the Neurology team came around to speak to us and expressed they seen something on the CT scan which indicated to every parents worst nightmare, meningitis. A lumbar puncture was performed to investigate this further to see what kind of bacteria the meningitis was. At this point we was told the only thing that we could do was to sit and wait to see what happened when he woke up and pray that the super antibiotics that was given to him when he was in Musgrove would have kicked in quick enough that the meningitis didn’t hurt his little brain too much.

Tommy remained stable until the early hours of Friday morning when his heart rate dropped and they had to perform another CT scan to see if anything had changed. Devastatingly for us, this CT scan showed the absolute worst. We was informed that in just 24 hours the meningitis had essentially destroyed our baby boys whole brain and that he would never wake up. In the early hours of Saturday morning our baby boy passed away painlessly and peacefully cuddled in between his Mummy and Daddy, the two people who loved him the most in the world.

What happened to our baby boy was a tragedy, he was seen by all the right people at all the right times. He’d seen A&E doctors, out of hours doctors, the GP only 24 hours prior and was showing all signs that he was on the mend. We were responsible and loving parents, we’d done everything and taken him everywhere but it was concluded that the meningitis was so rapid that everything that could have been done, by ourselves and medical professionals, had been done.

As you can imagine this is a very long story, kept as short as possible and with as much detail as we are willing to share about our precious boy, whom we kept very private. But what we do know is that we want to keep his memory alive and we want him to have a legacy forever.

Our story is horrific, it’s unfair and unjust but unfortunately we are not alone. Babies and children go into PICU every single day and anyone that has ever been on a PICU will tell you that these places are hell on earth and your absolute worst nightmare not only as a parent, but as a human being. But what they will also tell you is that they are full of the greatest, kindest and most caring people on earth too. The incredible doctors, nurses and all the support staff on that ward are real life heroes, they don’t have capes, they don’t get paid nearly enough and they do not get the recognition they deserve. They turn up and do their jobs with care, compassion and dignity every single day, 365 days a year, to help, save and look after some of the most vulnerable little ones in the country.

Parents with babies on PICU are warriors, they are fighting right alongside their little ones for their lives. They are holding strong when all around them is crumbling, they are reassuring their babies that everything is going to be ok, when they feel anything but and they are holding out for that tiny margin of positivity in the day. They are constantly in fight or flight mode, ready to react to any given beep at any given moment with very little rest bite.

And well the babies and children, just like our Tommy Rob’s, are the most precious little things in the world and they do not deserve to be there. They should be at home with their parents and loved ones playing, learning and growing and causing as much chaos as possible.

That’s our reason, we want to raise as much money as possible for everyone above. Unfortunately, we cannot stop the fact that PICU is incredibly needed and sadly always will be, but what we can do is help parents and children whilst they are there. All money raised in Tommy’s name will go towards supporting families and children on PICU in Bristol Children’s Hospital from family accommodation to medical equipment, parent facilities and treats for the hard working staff.