Williams Good Night
Donation protected
Please can you help our 15 year old son William who suffers from a rare neurological disorder called Rhythmic Movement Disorder (RMD)
See Sleep Education website for more information on this condition.
William also has other special needs and if you can spare 5 minutes, please read our story below and if possible, make a much needed donation.
William is now 14 years old and 6 feet 3 inches tall
Hello, we are the Huntley's, Mum Liane, Dad Robert, Daughter Rachel and William. We are raising funds for an extension for our home for William, who has complex special needs, which are ADHD, learning delays, hyper extendable joints, autism and severe Rhythmic Movement Disorder (RMD).
William only sleeps for around 4 hours per night and the rest of the time he slams his head to his feet continuously, for up to 6 hours and has been doing this every night from the age of one. He suffers lots of injuries and friction burns from these movements and I am up with him all night, every night and have done this for 13 long and arduous years.
It has taken 12 years to get a diagnosis for William due to the NHS letting us down by not giving us the correct help and not matching us with a specialist for this condition. We have had over 50 professionals involved with his care, and currently William is with Sheffield Children's Hospital, the ‘den’ at Chesterfield Royal Hospital and Southampton Hospital, where he’s finally being seen by the correct doctors for his condition.
Over the years we have had blood tests, MRI scans and sleep studies which showed he was only getting low levels of sleep and no REM sleep. We have tried a variety of drugs but nothing has helped and we have now been informed there is no cure as he is a rare case and we have to learn to manage it.
Williams needs a special bed from Safespaces so he can’t hurt himself any longer. We need to build a double bedroom for this bed to fit as it needs to be 7ft long with sound proofing and fibre optic lighting. Safespaces beds are made to order and cost £8,000 and he’ll require a custom made one as William is 6ft 3” tall and still growing! I have tried various beds and even a mattress on the floor but the impact of the force he uses vibrates on the floor boards and wears holes in the copper radiator pipes and we have had water damage in the kitchen due to this.
I need to sleep in the day so I have enough energy and be alert enough to be able to cope when he finishes school at 2.30pm, until bed time, when the cycle begins again. I don’t work as I am exhausted all the time and need to be available to care for William. He has a 15 hour statement at school but we need more hours as he finds school quite hard and has many breakdowns each week. He starts school later in the morning as he can’t cope with the noise from other people and getting him ready is a task all in itself. My husband, Robert also suffers as he works full time and when he’s home he will fall asleep in the chair, and just hasn't the energy to get anything done at home due to the poor sleep we’re all suffering from. Our family life is non-existent.
I also have a daughter called Rachel who is 17 and is studying Health and Social Care at Chesterfield College and is a cadet for St John’s Ambulance. Rachel wants to become a paramedic as she can't help William but she wants to help others. Rachel has to help me with William and running the household. Life for her is hard and she hides away from family life and struggles to cope and cannot bring friends home due to William’s behaviour.
Taking William on holiday is not viable because of the night time movement. He breaks beds with the impact of the head banging and it wouldn’t be fair on other guests due to the noise levels.
William is a very happy boy who loves playing and watching football. He supports Chesterfield FC and is a season ticket holder. William also follows Manchester United and plays for the Chesterfield Youth Bowling Club (ten pin bowling). He struggles to understand the world around him and interaction with others can be difficult as he won’t communicate with other people. He spends most of his time in his bedroom and we want to make him one that he can feel safe and comfortable in.
We need to share his story on how rare his sleep
disorder is so other families don't have to go through what we have had to. This year we are going tell our story on TV and in the press and do as much fundraising as we can to reach our goal and help William.
Please could you help to our cause by donating or even put on a fundraising event for us or sell scratch cards to family/work colleagues?
You can follow us on Facebook, at ‘Williams good night campaign’.
Many thanks for your support, we are extremely grateful.
Please help spread the word!
Thank you,
Liane Huntley.
See Sleep Education website for more information on this condition.
William also has other special needs and if you can spare 5 minutes, please read our story below and if possible, make a much needed donation.
William is now 14 years old and 6 feet 3 inches tall
Hello, we are the Huntley's, Mum Liane, Dad Robert, Daughter Rachel and William. We are raising funds for an extension for our home for William, who has complex special needs, which are ADHD, learning delays, hyper extendable joints, autism and severe Rhythmic Movement Disorder (RMD).
William only sleeps for around 4 hours per night and the rest of the time he slams his head to his feet continuously, for up to 6 hours and has been doing this every night from the age of one. He suffers lots of injuries and friction burns from these movements and I am up with him all night, every night and have done this for 13 long and arduous years.
It has taken 12 years to get a diagnosis for William due to the NHS letting us down by not giving us the correct help and not matching us with a specialist for this condition. We have had over 50 professionals involved with his care, and currently William is with Sheffield Children's Hospital, the ‘den’ at Chesterfield Royal Hospital and Southampton Hospital, where he’s finally being seen by the correct doctors for his condition.
Over the years we have had blood tests, MRI scans and sleep studies which showed he was only getting low levels of sleep and no REM sleep. We have tried a variety of drugs but nothing has helped and we have now been informed there is no cure as he is a rare case and we have to learn to manage it.
Williams needs a special bed from Safespaces so he can’t hurt himself any longer. We need to build a double bedroom for this bed to fit as it needs to be 7ft long with sound proofing and fibre optic lighting. Safespaces beds are made to order and cost £8,000 and he’ll require a custom made one as William is 6ft 3” tall and still growing! I have tried various beds and even a mattress on the floor but the impact of the force he uses vibrates on the floor boards and wears holes in the copper radiator pipes and we have had water damage in the kitchen due to this.
I need to sleep in the day so I have enough energy and be alert enough to be able to cope when he finishes school at 2.30pm, until bed time, when the cycle begins again. I don’t work as I am exhausted all the time and need to be available to care for William. He has a 15 hour statement at school but we need more hours as he finds school quite hard and has many breakdowns each week. He starts school later in the morning as he can’t cope with the noise from other people and getting him ready is a task all in itself. My husband, Robert also suffers as he works full time and when he’s home he will fall asleep in the chair, and just hasn't the energy to get anything done at home due to the poor sleep we’re all suffering from. Our family life is non-existent.I also have a daughter called Rachel who is 17 and is studying Health and Social Care at Chesterfield College and is a cadet for St John’s Ambulance. Rachel wants to become a paramedic as she can't help William but she wants to help others. Rachel has to help me with William and running the household. Life for her is hard and she hides away from family life and struggles to cope and cannot bring friends home due to William’s behaviour.
Taking William on holiday is not viable because of the night time movement. He breaks beds with the impact of the head banging and it wouldn’t be fair on other guests due to the noise levels.
William is a very happy boy who loves playing and watching football. He supports Chesterfield FC and is a season ticket holder. William also follows Manchester United and plays for the Chesterfield Youth Bowling Club (ten pin bowling). He struggles to understand the world around him and interaction with others can be difficult as he won’t communicate with other people. He spends most of his time in his bedroom and we want to make him one that he can feel safe and comfortable in.
We need to share his story on how rare his sleep
disorder is so other families don't have to go through what we have had to. This year we are going tell our story on TV and in the press and do as much fundraising as we can to reach our goal and help William.
Please could you help to our cause by donating or even put on a fundraising event for us or sell scratch cards to family/work colleagues?
You can follow us on Facebook, at ‘Williams good night campaign’.
Many thanks for your support, we are extremely grateful.
Please help spread the word!
Thank you,
Liane Huntley.
Organiser
Liane Huntley
Organiser
