James

“Meningitis was a word I had heard about but never thought much about. A word that now controlled us. A word that brought me to my knees and filled me with worry. I couldn’t breathe.”

These are the words of Rachel, whose son, James, was diagnosed with Meningitis when he was just five-months-old after refusing feeds and developing an uncontrollable temperature. The family live in Leicester.

“At hospital, my baby underwent so many tests and relied on so many drugs to keep him alive. He spent three weeks on intensive care and specialist wards.

“Our baby was so poorly.

“What was once our simple world, now consisted of trips to various medical professionals who told us more life-changing results such as learning delay, muscle weakness and drug resistant epilepsy.

“At 11-months-old James had a prolonged seizure and we took him back to hospital where to our utter disbelief and devastation, we were told he had meningitis again. This time with encephalitis, which is an inflammation of the brain.

“Having this second diagnosis was so hard to hear. How could this be happening again? This isn’t fair. We watched James go back to the hospital, we watched him going back on to the life-saving drugs and we cried as we watched his little body fight it again.

“At one point James’ veins shut down so the doctors had to drill in to his shin to insert a cannula, this was all while James had a two hour seizure. It was at this time we noticed James no longer made eye contact or spoke.

“Sadly James spent his first birthday and Christmas in hospital and was later diagnosed with Lennox Gastaut Syndrome, which is a type of epilepsy, secondary to Meningoencephalitis. But perhaps the scariest thing was because his epilepsy is uncontrolled and averages at around 17 episodes a day, James is at high risk of SUDEP – Sudden Unexpected Death in Epilepsy. That was so hard to hear and deal with.

“We have taken on the role of full time carers, PAs, nurses, pharmacists and a voice for James. A voice to fight for him. None of this allows us much time to be mummy and daddy to James.

“Our lives became so busy with appointments that we lost our friends and even our families couldn’t comprehend what our daily lives entailed. We became isolated and alone.

“It got to a point where I had no one to turn to. My phone only rang with calls from medical professionals for James. My mental health hit rock bottom. I felt robbed. Robbed of the opportunity to be a mum. I felt like I was letting him down and also Emily, James’s younger sister, because I was so drained.

“But then, we were introduced to Rainbows and I got the opportunity to speak to people who understood and could empathise with what we were going through. We were allocated a Family Support Worker who listens and offers support, a hug, a shoulder to cry on and a pillar to lean on. Someone to be encouraged by.

“We bring James for respite stays and he has his medical needs attended to and constant care. I can be a mum. I am able to relax and share in James smiles and joy.

“He has access to the soft play room which he can safely come out of his wheelchair and explore without the fear of injuries from seizures and falls. His sister can also play and explore alongside James which is vital in order for them to bond.

“We have family time in the Hydrotherapy Pool, which helps strengthen James muscles while he plays. Seeing his face light up with joy just melts me. I feel a relief wash over me.

“Rainbows is truly a home from home experience and we are so grateful for all of the support we received. When we brought James in for his first stay I remember being burnt out, exhausted and overwhelmed by everything that was happening at home. After five days of relaxing, laughing, eating and exploring, I left feeling refreshed, revived and ready to face the world.

“I do not feel alone anymore. I have so much support from everyone here at Rainbows and for that, I am thankful.”