Byline: By VICTORIA BONE
KATHERINE Nicholson's four-year-old son Harry wakes every hour of every night, cannot feed himself, is incontinent and often kicks and bites his mother.
She has devoted her life to giving round-the-clock care to Harry, who was born with the rare genetic disorder Williams Syndrome. Devotion that has destroyed her marriage and cost her her marketing job.
Katherine, 34, from Preston, Lancs, says: "Looking after Harry is incredibly intense. He is up and down every hour - if he sleeps at all. When you haven't slept for a week you do snap.
"Days without sleep is enough to break someone, but I've gone years. After bad nights it's almost impossible to focus on caring for him in the day."
Katherine's situation is far from rare. According to the charity Mencap, there are 770,000 disabled children in the UK. More than half of their families live in poverty, many because they can't find childcare which would allow them to work.
Many disabled children are not going to school or are excluded because their school cannot meet their needs.
Only a tiny percentage of families with disabled children get any support to help them care for their children. In a Mencap survey, eight in 10 of these families describe themselves as "at, or close to, breaking point".
In the most severe cases, parents are forced to give up their children altogether, putting them into care because they can no longer cope.
The Daily Mirror has teamed up with the Every Disabled Child Matters campaign to help parents such as Katherine. EDCM, made up of the charities Mencap, Contact a Family, Council for Disabled Children and the Special Education Consortium, is pushing for families with disabled children to get what should be theirs by right - services, support and the chance to lead an ordinary life.
So what can be done? First, services for disabled children need a serious funding injection. A current government review holds out the promise of new money.
Second, disabled children would become a local priority - instead of coming somewhere below licensing pubs and getting the rubbish cleared. The campaign charter gives councils the chance to sign up to show that disabled children matter in their area.
Third - and perhaps most important - families need new rights to support. The Disabled Children (Family Support) Bill, in Parliament this month, could give families with severely disabled children breaks from caring.
Dame Jo Williams, chief executive of Mencap says: "Most families with severely disabled children are at the end of their tether, absolutely drained.
"This Bill demands that every local authority and health service has a duty to provide short breaks. Every family would be entitled to a proper assessment and help structured around their individual needs. …