Mum Jessica, from Portishead in Bristol, tells their story here.
“Jude was eight days old when he contracted Group B Strep meningitis and sepsis in January 2010. One moment we were new parents with our first born; the next we were in hospital."
“We took Jude to the hospital at 3am. He woke with a very high-pitched scream, he wasn’t feeding properly, he looked grey and his eyes rolled as I lifted him from his crib. There was no rash."
“The snow had fallen heavily that day and we lived in a house with around 35 steps to the front door in a cul-de-sac. James, my husband, was digging snow to get the car out. It did not occur to me to call an ambulance – I had called the hospital earlier and they assured me he was fine."
Sure it was nothing to worry about
“It was only when the leg kicks, which were seizures, began that I became more flustered. However, we were in the car at that point and only 10 minutes from the hospital. We just had to get there quickly and I was sure it was nothing to worry about."
“I calmly spoke to the triage nurse and she took one look at Jude and within minutes the intensive care team was surrounding him and he was moved into resuscitation. He was having full body seizures at this point and his tiny eight-day-old body was shutting down."
“We were asked to leave the room. It’s a blur and I have memory block at this point. James tells me it was awful, but all I remember seeing was James’s shoulder as I put my head on it. I just can’t process what happened."
“We were eventually moved from resuscitation to intensive care. We all huddled into an emergency lift with Jude wired up to lots of machines in a tiny cot in the middle."
Explore the diagnosis
“We were told to be prepared for a wait in the family room for intensive care patients and that the consultant felt it was Group B Strep meningitis and sepsis, but they had to stabilise him if they could in intensive care and then explore the diagnosis."
“There was an agonising wait in the intensive care parents’ waiting room. There was a board full of messages of hope left by parents who had stood in that exact spot I was now standing in. I kept reading them and frantically searching for a sepsis or meningitis story which ended in a miraculous recovery. I actually didn't find one."
“As we waited we didn't even know if we would be called into intensive care and Jude would still be alive. It was surreal, an overwhelming, numbing feeling."
“I feel like for the first five days looking back I just held my breath. I felt nothing, just emptiness and I was broken."
I couldn’t hold Jude but I sang
“I sang to Jude. I couldn’t hold him, I couldn’t do much, but I sang."
"Yeah, you and me, we can ride on a star
If you stay with me, Boy
We can rule the world
Yeah, you and me, we can light up the sky
If you stay by my side
We can rule the world
If walls break down, I will comfort you
If angels cry, oh I'll be there for you
You've saved my soul
Don't leave me now, don't leave me now, oh."
“He was the little boy who made me a mother and I didn’t want him to go anywhere. He had to stay."
“We were sitting down on day five when it was decided a brain scan was needed. A very kind but serious consultant informed us of the results. Jude had a serious and significant brain injury and should he survive would have irreversible brain damage."
“I actually recall I screamed. James and I looked at each other and every emotion came out in those moments. However, we have remained strong together throughout this; it’s an unbreakable bond we have together. I can honestly say we cried, hugged and got angry, but that didn't last long. We left the room, absorbed the information, looked at our baby and we knew he just had to survive. Anything else that came with his survival we could and would manage."
Left hospital as a family of three
“Three weeks later we left hospital as a family of three."
“I don’t have many new thoughts on meningitis nine years later. I can’t believe it has taken me nine years to actually write this."
“We are strong parents but I would be lying if I said there is not guilt on my part. Could I have got him there quicker? Sadness, anger, the what-ifs. I watch my 7-year-old excelling and I watch my 9-year-old struggle. I see my 7-year-old struggling to support his 9-year-old brother. His disabilities affect the whole family unit."
“Where would he be now if it hadn’t happened? I go out with friends and I feel intense unease that I'm enjoying myself when my son could need me."
“However, that’s a small part of the feelings and the most important overwhelming feeling is the appreciation that he lived and the utter determination that he will have a good life and we will embrace whatever comes our way."
“We have been on a rollercoaster of diagnosis and fights for support. I advocate for my son daily. We have learned having a disability is being part of a minority and it isn't easy being a minority. The diagnoses just keep on coming, epilepsy, ADHD, autism and severe visual impairment. Out of all of them the severe visual impairment has been the hardest to accept."
A different but good life
“We live a different but good life, we embrace it, we cry, we laugh and we ensure there is always a holiday around the next corner."
“The neurologist sat us down before we left hospital with Jude, and he said if you want to give your son the best shot in life show him the world, put him out there, so we do. Every time we leave the house I teach him something new, we don't shy away from life."
“We are grateful he survived. We get asked a lot how we manage, or people comment on how hard it must be. Yes, it’s hard, very hard at times, but there were two options in January 2010. One was he survived; the other was he died."
“And we are beyond grateful that he survived.”
Jessica is running the Great North Run for us. You can support her efforts at https://www.justgiving.com/fundraising/jessica-heslop6.