Battling Lily, two, defies the odds thanks to hospice and her family

Lily Henigan with her dad Graeme
Lily Henigan with her dad Graeme

AN EASTBOURNE dad who nursed his daughter back from the brink of death has thanked Demelza Hospice Care for Children for their support over the last 18 months.

Little Lily, aged two-and-a-half, lives in Central Avenue, Old Town, with her family and needs 24-hour care from her dad Graeme Henigan.

Lily was a premature twin, diagnosed with swelling and damage to the brain at nine-months-old.

She is fed directly through her stomach, has almost no immune system and suffers from epilepsy and bowel problems.

Graeme explained that Lily was taken to an out-patient appointment in January and two days later contracted flu which nearly killed her.

She was rushed to hospital in London and there were times when her family thought they had lost her.

Graeme said, “The crunch came at the end of February because they said there was nothing else they could do for her. They said she had an hour to live and asked me what I wanted to do.

“I said I wanted her to be at home so I drove. She was in the back of the car and they didn’t think she would make it.”

But against all odds, Lily made it home alive and her consultant at the DGH admitted her to a hospital in Brighton where they agreed to do the things she needed to keep her alive.

Graeme said, “Demelza was a rock to us and they convinced everyone that it was worth saving her.”

Lily made it home to mum Nicola, twin sister Hollie and her older siblings Daryl, 20, and Ashley, 17, in time for her and Hollie’s second birthday.

Lily’s ordeal has been recorded in a video diary by Graeme. There are a series of eight films on You Tube and Lily is filmed enjoying herself on a bouncy castle during the birthday celebrations.

However, despite making good progress, life is difficult for the family with Graeme only taking short breaks from being a carer.

He said, “It is a case of trying to be a dad, a doctor and a nurse all rolled into one.

“It is difficult for the whole family because me and Lily live in a bubble a lot of the time.”

Graeme says he is grateful to Demelza Hospice Care for Children for all its help in providing respite, helping with her care plan and providing a 24-hour telephone support service.

Now Graeme and Nicola are planning fundraising events next year to raise much-needed money for the children’s hospice.

These include a Demelza awareness day at Princes Park on May 13 and a charity beach fishing match next year. The Eastbourne Golfing Park is currently raffling off a giant soft dog in aid of Demelza House and tickets are available from the golf park on Lottbridge Drove. The raffle will be drawn on December 3.

The family has also thanked the mayor of Eastbourne Carolyn Heaps for her help with their housing issues, the consultant pediatrician John Mitchell, and the community nursing team from Eastbourne DGH for all their help with Lily.