tephanie was born in June 12 years ago -a normal birth. She screamed and screamed as a small baby. We did not know why. From 12 weeks of age she started with Epilepsy which we have not been able to control since.

Stephanie presents as a happy child 'for which I am grateful'. She has a mental age of 12-18 months, severe Epilepsy, poor mobility skills and is fed via a Gastrostomy.

Steph lives with mum and sister Charlotte who is 10 years old. Charlotte has a medical history of congenital heart abnormalities and has undergone several surgeries to correct this. Mum's mental health is always stressed.

Stephanie wakes at 6am-6.30am each morning. She needs full assistance with washing and dressing. 'She is still in nappies'. She may have a seizure on waking! It takes half an hour to prepare Stephanie's medication and feed and another half an hour to give. Only 2 hours to the next feed!

Steph has to be bolus fed because of her Epilepsy – she is unable to go on an overnight pump. Steph is allergic to milk products and has to have a Soya based feed which means extra feeds to make up the daily calorie requirement. Feeding finishes at 10.30pm.

Stephanie wears a crash hat -not very glamorous- to protect her face. She has several different types of seizure, her most common being drop seizures and partial seizures. Grand Mal seizures average 1-2 each week which require rectal diazepam for rescue.

Steph spends most of her time at home watching videos, playing in the mirror with a bead chaser and Laa Laa from the Teletubbies. She enjoys going for 'walks' (I push her in the wheelchair) and listens to familiar nursery rhymes. She is unable to be left alone for obvious reasons. At night Steph has to be locked into a large cot for her own protection, a bed which I took delivery of just before Christmas 2005 thanks to Rock FM's Help a Local Child Appeal.

I cannot go anywhere without taking Steph with me. I don't have any family in England so Charlotte and me are full time carers.

We have the obvious glut of hospital appointments which are never ending for both of the children and all of the assessments by physio, occupational therapists, community doctors, speech therapists, keeps me busy with approx 1 appointment each week.

When Steph was offered a place at a respite unit I was over the moon. She would have somewhere to go, they could meet all her needs and she had some interaction with her peers.She has found new friends at Maplewood and enjoys some activities outside of home and I know she is well cared for.

This has been invaluable to me and Charlotte. We look forward to enjoying some time together doing 'normal things' like going swimming or to the cinema which we cannot normally do.

We are now in danger of losing our respite unit and my world is falling apart. Charlotte often has to go without her fair share of attention; she is only 10 years old and I have to spend all my time with her sister.

Eventually its bath time -Steph's favourite time of the day- closely followed by bed. So after a long day of constant feeding and nappy changes, entertaining Steph, being punched and kicked a couple of times during a frustrated moment, I now have half an hour with Charlotte before her bedtime.

I don't know how long I can keep doing all this. But I do know that if I lose my respite it will be a jail sentence.

I do have to get up a couple of times in the night but I can cope with that knowing that I will get at least one night's sleep each week when Steph goes to Maplewood House.

Every single family with a disabled child will have similar stories to tell.

Stephanie and her family need Maplewood House.

Stephanie has a rare chromosomal abnormality – we know of no-one else with this particular disability.

Q. Most people who work get at least 1 day off each week, why should carers be any different? They save the government billions in care and wage bills.