Caring for any child is a full time job but for eight-year-old Ryan Perkins parents the demands are greater than most.
Ryan was born with severe cerebyl palsy. He is blind, epileptic and needs 24-hour care.
So when a children's hospice opened in the South-East offering respite breaks for families with disabled children it became a lifeline for Portslade couple Gary and Debbie Perkins.
Now Demonza Children's Hospice in Newington, Kent, is experiencing major cash flow problems.
Staff have been laid off and the number of beds available to families has been halved.
Mr and Mrs Perkins, of Applesham Way, have launched a campaign to raise money for the home, which depends on charitable donations to survive.
The couple, who have two other children, Harry, five, and one-year-old Samuel, say the hospice has changed their life and will do anything to keep it open.
Mr Perkins said: "In the eight years since Ryan was born it is the only place we have found where the whole family can stay together.
"The nurses take over responsibility for Ryan's needs enabling us to spend time with our two other children. It is an incredible place.
"When you are desperate, and feel like you can't go on, you can ring up in tears and they will say come to us now. It really is a lifeline and we will do everything we can to keep it going."
The hospice can be contacted on 01795 843843.
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