Mum Sarah Shemmings is better placed than most to talk about the “invaluable, second-to-none” care and support provided by East Anglia’s Children’s Hospices (EACH). Ten-year-old son Bobby has a range of complex health conditions and the pair are regular visitors to The Treehouse, in Ipswich. In fact, the hospice has been part of their lives for nearly a decade.
Bobby was just nine months old when they first walked through the door and, as a family, they have benefitted in many ways, from respite care and music therapy to sibling days and EACH activities.
“I’d been talking to families in hospital so knew something about the hospice, but didn’t realise what a big part of my life it was to become,” said Sarah, 37.
“When we first started coming, it was a case of taking things slowly to begin with. I was reluctant to jump straight in because the staff didn’t know my baby and he didn’t know them. It took about six months to let go but we built things up, including a couple of overnight stays together, and now I can’t imagine life without EACH.
“Bobby’s ten so it’s been nearly a decade. I can’t believe where the years have gone but in that time we’ve done so many things together. One of the first things that springs to mind was joining the hospice choir and having the chance to perform to The Prince and Princess of Wales. That was amazing.
“There have been so many other things thanks to EACH, from music therapy and Christmas parties to lullaby sessions, carol services, a trip to Colchester Zoo and the chance to watch Ipswich Town. We also met the footballers just before Christmas and one of them, Conor Chaplin, arranged for a signed shirt to be sent to Bobby.
“I’ve got so many memories and can safely say life would have been a lot harder without EACH.”
Bobby had a normal delivery and it was only when taken to a baby clinic to be weighed that irregularities were spotted. Sarah, who lives in Otley and has three other children, Callum, 16, Jacob, seven, and Amelia, six, queried the fact he wasn’t reaching normal milestones. The health assistant advised her to make a doctor’s appointment, which led to hospital visits.
After scans, blood tests and a lumbar puncture, Sarah was told Bobby has Microcephalus (a condition where the brain doesn’t grow at the expected rate, meaning he has severe developmental delay) and Hydrocephalus (a build-up of fluid on the brain).
He also has Polymicrogyria (a condition characterised by abnormal development of the brain before birth), Global Developmental Delay (when a child takes longer to reach certain development milestones than other children their age), chronic lung disease, epilepsy and sleep apnea. He is on a ventilator 24 hours a day and relies on Optiflow (a high-flow nasal oxygen therapy device).
Sarah’s life changed very dramatically, very quickly.
“Over the years we’ve had so much support from other families and also the care team at the hospice, who have been invaluable and second to none,” she said.
“It makes the world of difference and pulls you through some pretty dark days. When you have a child with special needs, you live in a bubble and it can be hard talking to people on the outside. Here it’s completely different and, while I have my actual family and close friends, I have a whole new family at EACH.
“It’s so refreshing and I’ve met so many people from all walks of life, all on their own journey and all with amazing stories to tell. You need that support because sometimes life can be daunting and overwhelming. It’s full on, every single day.
“Whenever we go anywhere, it’s a military operation, because we have to take so much. I have a full trolley of stuff, plus Bobby’s wheelchair. Coming here is a safe space.”
Bobby loves music therapy, spending time in the sensory room and being entertained by The Clowndoctors. With their distinctive yellow doctor coats and red noses, the latter use interactive, creative play, song and storytelling to engage children.
Despite his various health conditions, Sarah says he is a real character.
“I love his laugh, his smile and the way he looks at me sometimes,” she said.
“He loves Disney films, especially The Lion King, and is a huge fan of singer Olly Murs. His face lights up when I play his music on my phone. Bobby took a turn for the worst shortly before the pandemic, in October 2019. Things were looking bleak and we weren’t sure if he was going to get through the night.
“I played some music and his whole face and body responded. It was incredible and no-one, including the medical staff at the hospital, expected such a positive reaction. Bobby’s a very special little boy. In darker moments it’s easy to feel depressed. You ask yourself ‘why me?’ and ‘what have I done?’
“People say they don’t know how I cope but, as any special needs parent will tell you, you get on with things because you have to. When you have children, they become your world and your complete focus. If I crumble, who’s going to be there to look after Bobby?
“He’s taught me so much about myself and, in terms our journey, I’m so grateful for the support provided along the way by EACH. I feel a sense of relief every time I walk through the door.”