A cheeky smile that touched hearts

01 February 2019
Elektra-May had only a short life, but it was a full and vital one. Despite having to deal with their daughter’s serious medical conditions, parents Bonnie and Jonathan were determined to have fun as a family – so even though they lost Elektra three months shy of her third birthday, they have a treasure trove of precious memories.
 
Bonnie’s pregnancy was normal, but following a difficult labour and delivery Elektra stopped breathing for 20 minutes before being resuscitated. She was transferred to the special care baby unit at the Royal Sussex County hospital in Brighton for cooling therapy, which improves the chances of survival and limits brain damage in newborns starved of oxygen by reducing their body temperature for several days.

Doctors were concerned that Elektra would not be able to cope without life support but, showing her fighting spirit, she did so well she was transferred back to hospital in her home town of Hastings within a few days. 
 
Shortly after Elektra’s birth, the family was referred to Demelza Community, our hospice at home service in East Sussex. “Demelza was life support for us,” says Bonnie.
 
Our Demelza care team was on hand when the baby girl came home at five weeks, and the family also received homecare support from the local authority. Diagnosed with severe epilepsy, dystonia – which causes uncontrolled, often painful muscle spasms – and an underlying genetic condition, Elektra’s needs were exhausting but, wherever possible, normal family life went on.
 
“We went on trips to London, to Brighton Pier and the Sealife Centre – the smile on her face said it all,” recalls Bonnie. Not having a car meant getting to our residential Kent hospice was difficult, so Palliative Care Nurse Advisor Jane Streeter drove Elektra there for respite breaks, and took the couple for a visit too.
 
“Poor Jane – Elektra loved being on a train or the bus but she hated cars and she’d scream the whole way there and back!” laughs Bonnie. “She loved it when she was there though – the hydrotherapy pool and sensory room especially.”
 
As for every young family, Christmas was an extra special time, and Demelza was on hand to create magical memories. At her first Christmas Elektra helped light the candle at Demelza’s carol concert in Eastbourne, and they always came along to our festive party for families receiving care and support.
 
At the party in 2017, special guests included characters from the Disney animated film Frozen. A huge fan, Elektra was delighted. But by then her health was failing, and when she fell victim to a particularly severe seasonal flu outbreak there was no more fighting back. She spent Christmas in hospital, and died on 27 December.
 
Our care team were by the family’s side, and Bonnie and Jonathan were also touched by the support given by the many members of the Conquest Hospital staff who had got to know Elektra.
 
Demelza helped with the funeral arrangements and arranged bereavement counselling for the couple, who now live in Eastbourne, and will stay in touch for as long as they need. As they grieve for their daughter, Bonnie says: “It helps knowing how well-loved she was. Elektra was unique – a cheeky monkey who didn’t follow the rule book. She shouldn’t have made it to her first Christmas or first birthday but she continually surprised everyone.”
 
* As a charity, Demelza Hospice Care for Children is almost entirely dependent on the generosity of our supporters to provide the funds that keep our services going. Please help us make sure every family and child can depend on us when they need us.