- A
- P
- K
Hello, Oliver has a rare brain condition called Lissencephaly (which basically means smooth brain). This is a degenerative condition with poor prognosis with many passing before reaching 10 years old.
Oliver is 6 Years old (a tall boy at that) with a development level of a 3-6 month old, is completely non verbal. He cannot sit or stand unless supported, He has very very little use of his limbs or hands/feet. He can roll from his back to his front and back (not a full turn) and has limited head control. He is double incontinent.
Oliver is Gastronomy tube fed due to poor swallow, any oral foods have to be a certain consistency and he can tolerate tiny amounts as he tires easily resulting in him aspirating.
Unfortunatley he suffers with Gastroesophageal reflux disease and has had the surgical procedure Nissan fundolipication to help prevent this (currently has loosened).
He suffers with re occurring chest infections always requiring medical treatment.
Sadly he has uncontrollable epilepsy, currently he seizes 4-5 times every day, his last seizure free day was May 2011, he has suffered with various seizure type but his main ones are Clonic Tonics and Myoclonic's. We have tried many many different medications and combinations. He had a VNS implant in Dec last year but have had issues with the wounds since resulting in it being turned off and the battery being removed (battery being replaced March 18th). So far this year he's had a troublesome year with a new seizure type Gelastic Seizures (laughing seizures), He ended up in PICU in Southampton on a ventilator after being in Status Epilectus. We've had many hospital trips/stays because of his epilepsy. When he's unwell his seizures will increase, they can happen at anytime with no warning signs including through the night.
He needs 24/7 care and supervision in every aspect of his life.
With all the above he is gorgeous and courageous in everything he goes through, he has a beautiful character and thrives best when he's around other children (Well when well).
His parents have no hoisting equipment, or washing facilities for Oliver, he shares a bedroom with siblings resulting in them having poor sleep because of him. They carry him up and down the stairs, lifting him in and out of bed and bath. He has to be lifted in and out of his various seating/standing equipment. He is carried to and from the car which is on the road (no driveway). This is a massive amount of lifting/moving which causes pain in their back (particularly his mother who takes pain relief daily).
His parents have applied for a DFG 2 years ago (disabled facilities grant) to provide a downstairs bedroom with shower facilities, hoisting equipment as well as access to the property, it also included widening of the current doorways. The first lot of plans were perfect, giving him storage space for his numerous equipment and health care supplies, floor space so he's not confined to his seating equipment or bed and still giving him the ability to be with the family rather than being segregated. This also included a dropped kerb and driveway giving them much needed space to get him in and out of the car. However this came in at an estimated cost of 60k and the local authority will only award what they say is the maximum of 30k. There is no way the remaining 30k can be sourced by his parents. So another plan was drawn which were ridiculous..he never even had a window thankfully the O/T refused this. A third lot of plans have been drawn up which does give him a small bedroom and wet room (will only fit his bed) and access from the rear of the house only, this gives him no floor space at all meaning he will be confined to a seat or his bed 24/7, his current seating equipment only just fits through now but this won't be the case as he grows, meaning he'll be in his bedroom. This doesn't included any storage space....where they think a seating system, standing frame, ppod and wheelchair is going to go not to mention his toileting and medical supplies.
Still this has been quoted at 46k still meaning 16k needs to be sourced.
To clarify the above funds requested to raise, is so they can add it to the 30k from the DFG and have the initial plans which suit Oliver and his needs better rather than the 3rd set of plans which may be cheaper but unsuitable.
This would dramatically change Oliver's family's day to day life, making the essential care of Oliver much easier which is vital to family themselves. This also gives him the indispensable time to be part of the family creating beautiful memories.
Oliver and his family would be massively grateful for any donations received, Thankful wouldn't come close to how they would feel, they would be indebted to you forever as this really is life changing.
Thank You xx
(any additional funds would go on to provide Oliver with essential seating equipment as well as sensory equipment....bubble walls etc for his new room)
Oliver is 6 Years old (a tall boy at that) with a development level of a 3-6 month old, is completely non verbal. He cannot sit or stand unless supported, He has very very little use of his limbs or hands/feet. He can roll from his back to his front and back (not a full turn) and has limited head control. He is double incontinent.
Oliver is Gastronomy tube fed due to poor swallow, any oral foods have to be a certain consistency and he can tolerate tiny amounts as he tires easily resulting in him aspirating.
Unfortunatley he suffers with Gastroesophageal reflux disease and has had the surgical procedure Nissan fundolipication to help prevent this (currently has loosened).
He suffers with re occurring chest infections always requiring medical treatment.
Sadly he has uncontrollable epilepsy, currently he seizes 4-5 times every day, his last seizure free day was May 2011, he has suffered with various seizure type but his main ones are Clonic Tonics and Myoclonic's. We have tried many many different medications and combinations. He had a VNS implant in Dec last year but have had issues with the wounds since resulting in it being turned off and the battery being removed (battery being replaced March 18th). So far this year he's had a troublesome year with a new seizure type Gelastic Seizures (laughing seizures), He ended up in PICU in Southampton on a ventilator after being in Status Epilectus. We've had many hospital trips/stays because of his epilepsy. When he's unwell his seizures will increase, they can happen at anytime with no warning signs including through the night.
He needs 24/7 care and supervision in every aspect of his life.
With all the above he is gorgeous and courageous in everything he goes through, he has a beautiful character and thrives best when he's around other children (Well when well).
His parents have no hoisting equipment, or washing facilities for Oliver, he shares a bedroom with siblings resulting in them having poor sleep because of him. They carry him up and down the stairs, lifting him in and out of bed and bath. He has to be lifted in and out of his various seating/standing equipment. He is carried to and from the car which is on the road (no driveway). This is a massive amount of lifting/moving which causes pain in their back (particularly his mother who takes pain relief daily).
His parents have applied for a DFG 2 years ago (disabled facilities grant) to provide a downstairs bedroom with shower facilities, hoisting equipment as well as access to the property, it also included widening of the current doorways. The first lot of plans were perfect, giving him storage space for his numerous equipment and health care supplies, floor space so he's not confined to his seating equipment or bed and still giving him the ability to be with the family rather than being segregated. This also included a dropped kerb and driveway giving them much needed space to get him in and out of the car. However this came in at an estimated cost of 60k and the local authority will only award what they say is the maximum of 30k. There is no way the remaining 30k can be sourced by his parents. So another plan was drawn which were ridiculous..he never even had a window thankfully the O/T refused this. A third lot of plans have been drawn up which does give him a small bedroom and wet room (will only fit his bed) and access from the rear of the house only, this gives him no floor space at all meaning he will be confined to a seat or his bed 24/7, his current seating equipment only just fits through now but this won't be the case as he grows, meaning he'll be in his bedroom. This doesn't included any storage space....where they think a seating system, standing frame, ppod and wheelchair is going to go not to mention his toileting and medical supplies.
Still this has been quoted at 46k still meaning 16k needs to be sourced.
To clarify the above funds requested to raise, is so they can add it to the 30k from the DFG and have the initial plans which suit Oliver and his needs better rather than the 3rd set of plans which may be cheaper but unsuitable.
This would dramatically change Oliver's family's day to day life, making the essential care of Oliver much easier which is vital to family themselves. This also gives him the indispensable time to be part of the family creating beautiful memories.
Oliver and his family would be massively grateful for any donations received, Thankful wouldn't come close to how they would feel, they would be indebted to you forever as this really is life changing.
Thank You xx
(any additional funds would go on to provide Oliver with essential seating equipment as well as sensory equipment....bubble walls etc for his new room)
Organizer
Louise Fell
Organizer