“We were in disbelief and absolutely devastated, not understanding how such a beautiful, content, little baby could have so many problems and that there was nothing that could be done to help her. Our whole world had just fallen apart and been shattered. We didn’t know how to go on.”
That was how Karyn Hardy, 27, and husband Daniel, 29, from Dersingham, felt in January 2018 upon hearing the vital organs of their newborn daughter, Mercedes, were shutting down.
Karyn continued: “Mercedes was a beautiful and strong baby. She was very happy, with an angelic smile. She’d light up the room and make everyone smile, and proud.”
Mercedes also had Smith-Lemli-Opitz syndrome, a rare developmental disorder estimated to affect one in 20,000 to 60,000 newborns.
It meant she stayed in the neonatal intensive care unit of Norfolk & Norwich University Hospital. She had cleft lip and palate, and that combined with the syndrome meant she was not allowed to lay on her back as she would have been prevented from breathing properly.
On 11 January, just seven days after she had arrived, Mercedes died. Her family’s New Year, full of double the normal excitement, had flipped upside down in the most tragic of circumstances.
Hairdresser and nail technician Karyn and RAF Marham-based Daniel, though, along with children Alexus, eight, and son Leon, six, who go to Dersingham VA Primary School, are determined to remember Mercedes and honour her memory, and will be taking part in the King’s Lynn Bubble Rush on Sunday, 16 June.
The event is being organised by EACH. We were there for the family in their darkest days and continue to be now, with bereavement groups for them to take part in and counselling for Karyn.
She says: “EACH has made a fantastic and positive impact on our lives. When any positives have been hard to find, the support has been amazing. Both Alexus and Leon really enjoy going to the group sessions. Alexus told us she enjoys the group sessions because the other children who attend understand how she feels and that they have all lost a brother or sister, too. If we didn’t have EACH, I don’t think we’d be able to carry on with our lives. It’d just be one depressive day after another, with no-one to talk to and no support. We’d not know who to turn to or where to get help, and feel very alone and isolated. I believe I wouldn’t want to leave the house or know how to carry on with a normal life.
“EACH gave us the chance to spend a few days with Mercedes after her passing and provided us with Mercedes’ handprint cast, among other things. We also got the chance to go to family events at [EACH’s hospice in] Quidenham and meet other families who’ve gone through the same situation. Andy from EACH produced the hand cast and prints. They’re fantastic and a great memory we’ll be able to keep forever. We got some canvas prints of our hands with Mercedes’ as well, so we’re joined as a family in the canvas forever. All these memories will be with us forever and never leave us.”
The family will be taking part in the Bubble Rush alongside Karyn’s parents, Dawn and Iain, and Daniel’s mum, Kim, and sister, Amy.
“We’re all taking part in the Bubble Rush in memory of our angel Mercedes and to give a massive thank you to EACH for all their support,” said Karyn. “We’re looking forward to it very much as it’ll not only be fun, but also our chance to give something back.” Head to www.each.org.uk/bubblerush for more information. Online registration will close midnight on Thursday, 13 June.