About Grace
 The Grace House North East Children’s Hospice Appeal will be named after eight-year-old Grace Jones.
The angelic, curly-haired youngster who suffers from a mystery illness that has left her disabled and unable to speak.
Broadcaster Kathy Secker, who founded the Grace House North East Children's Hospice Appeal, met Grace and her parents Debra and Darren while carrying out research into the need for a children’s hospice.
Debra and Darren joined the charity’s board of trustees and were delighted when Kathy suggested naming the hospice after their daughter.
More than 1,200 North East families whose children have life-limiting or long-term illnesses could benefit from the respite care that would be offered by Grace House North East Children’s Hospice Appeal.
Debra and Darren know only too well the difficulties faced by those families. Debra said: “When I first heard the words ‘severely handicapped’, the world felt like a very dark place. We had entered this ‘disabled world’. I didn’t know how I would cope, but I knew that I had to, because I was the only mum Grace has. I’m very, very close to her and very protective of her. I had to get used to the idea that all of the dreams I had for her, like dancing classes and what school she would go to, weren’t going to happen. It was a case of having to adapt to this new way of life. But she’s worth it, and I feel much stronger since she came along.”
It became clear early on that Grace had problems when she suffered a seizure at just a day old.
 Debra, an auxiliary nurse, said: “She was admitted to the neo-natal unit when she was only eight days old, but all the tests came back negative. But when she got to the age when babies are supposed to gain head control, she wasn’t doing it. It was then that we realised something was wrong - her brain wasn’t growing as it should. Between the ages of one and two, she used to scream every hour of the day and night, and would make her throat bleed by screaming that much .We were desperate to find answers because she was in this terrible state.”
Grace has undergone a series of tests since she was a baby, but doctors have been unable to conclusively diagnose her condtion.
Grace attends Sunningdale Special School, where she receives special therapy.
Debra said: “She is progressing very, very slowly, and is really settled now.”
 Grace is surrounded by her loving family, including her doting step-brother Dillon. Debra and Darren are focused on helping Sunderland get its own children’s hospice, which will benefit hundreds of families like theirs from across the North East.
Debra says: “When Grace is ill, I don’t know what is going to happen next. That’s what I find hard. Sometimes you feel like you need some emotional support - the kind that nurses and staff in a hospice could provide. When I was asked if I wanted to get involved in this hospice, I said yes straight away.”
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