“Rainbows is my reminder that no matter what storm we all go through, the rainbow will always be there to shine a light on us all. That we are not alone. We are not just another diagnosis on paper, we are real people with real feelings that deserve love and care. To Rainbows, I am forever grateful.”
Shannon, from Nottingham, and her family have been supported by Rainbows since 2020. Her son, Kane, suffered his first seizure just 20 minutes after he was born.
“Kane was taken away for checks and it was three hours before I could then see him and I was told he was very poorly,” said Shannon. “His incubator was surrounded by doctors, beeping machines, wires on his little body, needles delicately placed in his head and many IVs running many medicines into his veins. They told me his body kept on seizing and they couldn’t get on top of his seizures. He was eventually intubated and his body was forced to rest.”
This felt all too familiar for Shannon, who had previously had a traumatic birth with her eldest son, Cole. Thankfully, Cole is now a healthy and vibrant young boy but at birth, he spent nine days in Neonatal Intensive Care Unit with pneumonia and two collapsed lungs.
For Shannon, she felt like she was reliving the nightmare and at two-months-old, Kane was diagnosed with Migrating Partial Seizures of Infancy – a severe and rare form of epilepsy that begins in early life. His prognosis is very poor and Shannon has been told by specialists that his epilepsy is life-limiting. “Sadly, early childhood is when most children would pass away due to the severe complications they receive from Migrating Partial Seizures of Infancy,” she said.
“The seizures are better controlled for now with constant supervision and regular medicines. But Kane relies on support from myself for all of the daily care, moving and handling and suction, feeds, position changes and personal care. He is registered blind and non-verbal.
“In my heart I am optimistic. I choose to believe the best in Kane’s diagnosis, regardless of the statistics, but that doesn’t mean I choose to ignore it. I know that one day my world will come crumbling down and I will be broken but I know that Rainbows will always be there for me. For us.”
When Shannon was first introduced to our hospice, she was told she could be supported at home and in the hospice and always have someone to talk to on the phone.
“Since we have had access to Rainbows, I have seen Outreach Therapy, home sitting, music therapy and a Family Support Nurse who all support me, Kane and Cole at home,” she said. “We’re lucky to have the support of friends and family but they don’t understand the full extent of life with both the boys.
“Knowing Rainbows supports so many families like us or similar, it really does take the pressure off me. The staff are all empathetic, kind hearted and are my shoulder to lean on when I needed them. Rainbows plays an important role in our lives and has become our second family.
“Staying at Rainbows allows me to fully step back from being medical mummy and fully trust staff with my delicate little Kane, something I struggle with at home. When I am there I am able to focus solely on him and enjoy our one to one time without changing, medications, suction and many other things. I can also be more present in Cole’s life and enjoy story time before bed together, messy play, football, singing and enjoying meals together without the need to dash out for meds or do chest physio.
“As a family, at Rainbows, we have been swimming, something that I haven’t been able to do without someone to support Cole as I need to watch Kane. I was able to fully enjoy time in the pool with both boys who were safe and happy.
“Kane has enjoyed stories, massages, sensory garden, messy play, relaxing on the water bed and sensory bed all supported by such wonderful staff giving him the dignity and care he deserves.”
Rainbows is my reminder that no matter what storm we all go through, the rainbow will always be there to shine a light on us all.