Oliver's Army Great South Run 2016
Donation protected
This October a team of runners will be hitting the streets of Portsmouth to take part in the Great South Run. We are a team of completely mixed abilities all with one goal to help this wonderful boy..........
Oliver is my son, he is 10 years old and has severe and complex disabilities. At 5 days old Oliver suffered a blood clot on the brain caused by a delayed and traumatic birth, his chances of survival at this stage were put at less than 5%. Following this, aged 1 Oliver was diagnosed with Cerebral Palsy and subsequently Hydrochephalus (fluid on the brain), severe epilepsy, severe developmental delay, stomach dysfunction and disorders of the bladder and bowel. Due to all of these diagnosis Oliver requires round the clock care as he cannot walk or talk and is reliant on an adult at all times to keep him safe. Oliver cannot feed himself and is fed by tube overnight as his stomach cannot digest an ordinary diet. Oliver has a tremendous spirit and makes an impression on everyone he meets. His passions in life are Postman Pat, pop music (particularly girl groups!), jokes and typically for any 9 year old boy toilet humour!
3 years ago Oliver was taken seriously ill after a two year period of hospital admissions due to Epileptic Seizures that did not respond to treatment. At this time all treatment that would ordinarily be used was ineffective and we were told to expect the worst. A specialist diet called the Ketogenic diet was started via his feeding tube on the advice of Great Ormond Street hospital and thank goodness it stabilised his condition after a long two years spent in and out of hospital. Oliver was in hospital for 4 months and had to learn how to eat again, he couldn’t even play with any basic toys and the little speech he had before was lost and still hasn't returned to this day.
Oliver is very lucky to be here. He has fought many battles and continues to do so on a daily basis. This year Oliver has already endured 2 major operations on the bladder and bowel and has further surgery booked for later in the year during which his legs will have to be broken and reset with metal plates due to hip dislocation from which he suffers pain on a daily basis. If this operation isn’t performed he will end up having to have spinal surgery with even higher risks. This year is going to be a tough one for Oliver and us as a family as Oliver will experience high levels of pain following the surgery and new care procedures will have to be learnt.
Last year after focusing for several years on getting through each day with Oliver I decided to start fundraising activities to adapt our garden as Oliver was completely unable to access it in his wheelchair. For the first time I was able to think about improving his quality of life rather than just hoping he would get through every day. The fundraising went well and the garden project started at the end of July last year. The main landscape and construction of the garden was completed but due to Autumn bringing not such good weather and a lack of funds there is outstanding work to be completed in the garden. My aim is to add some sensory items for Oliver and a planting area that Oliver and his sister Jasmine can enjoy together.
I am also continuing my fundraising in order to purchase monitoring equipment for Oliver’s overnight care, this will mean he is safe at night and not as reliant on a person being with him all the time. We have carers in the house most of the time but hope as Jasmine gets older and as funds allow to buy monitoring equipment that this can be reduced to give us all a better quality of ‘normal’ family life. Equipment and therapy through the NHS is very limited and I have to fight on a daily basis to obtain even the most basic items for him. I have had to undertake several legal cases via public funding to ensure Oliver’s voice is heard through me and that his basic schooling and care needs are provided for.
I am extremely passionate about Oliver’s Army, I made a promise to myself when Oliver survived to give him the best quality of life I possibly could. Sadly I have to look at Oliver every day with the thought that this isn’t how he should be and that he will never know the life he should of had. He won’t ever be able to run or jump, he won’t ever be able to tell me if he’s scared, worried or frightened and he won’t ever grow up and leave home to experience any kind of independent life. It breaks my heart to know all of these realities but I have to carry on and make his life the best it can be. He is my whole world and I will fight and fight for him to make sure his life is fulfilling, enjoyable and fun and is as pain free (as possible).
Oliver will always need me and the rest of the family for daily support and encouragement but also to fight his cause. The costs associated with raising a child with Oliver’s needs are huge and ultimately his quality of life will only be improved by having funds to provide all of the therapy and equipment needed to do so. Equipment costs run in to thousands of pounds and funding is not provided for even the essentials let alone any extras.
Please support us............
Oliver is my son, he is 10 years old and has severe and complex disabilities. At 5 days old Oliver suffered a blood clot on the brain caused by a delayed and traumatic birth, his chances of survival at this stage were put at less than 5%. Following this, aged 1 Oliver was diagnosed with Cerebral Palsy and subsequently Hydrochephalus (fluid on the brain), severe epilepsy, severe developmental delay, stomach dysfunction and disorders of the bladder and bowel. Due to all of these diagnosis Oliver requires round the clock care as he cannot walk or talk and is reliant on an adult at all times to keep him safe. Oliver cannot feed himself and is fed by tube overnight as his stomach cannot digest an ordinary diet. Oliver has a tremendous spirit and makes an impression on everyone he meets. His passions in life are Postman Pat, pop music (particularly girl groups!), jokes and typically for any 9 year old boy toilet humour!
3 years ago Oliver was taken seriously ill after a two year period of hospital admissions due to Epileptic Seizures that did not respond to treatment. At this time all treatment that would ordinarily be used was ineffective and we were told to expect the worst. A specialist diet called the Ketogenic diet was started via his feeding tube on the advice of Great Ormond Street hospital and thank goodness it stabilised his condition after a long two years spent in and out of hospital. Oliver was in hospital for 4 months and had to learn how to eat again, he couldn’t even play with any basic toys and the little speech he had before was lost and still hasn't returned to this day.
Oliver is very lucky to be here. He has fought many battles and continues to do so on a daily basis. This year Oliver has already endured 2 major operations on the bladder and bowel and has further surgery booked for later in the year during which his legs will have to be broken and reset with metal plates due to hip dislocation from which he suffers pain on a daily basis. If this operation isn’t performed he will end up having to have spinal surgery with even higher risks. This year is going to be a tough one for Oliver and us as a family as Oliver will experience high levels of pain following the surgery and new care procedures will have to be learnt.
Last year after focusing for several years on getting through each day with Oliver I decided to start fundraising activities to adapt our garden as Oliver was completely unable to access it in his wheelchair. For the first time I was able to think about improving his quality of life rather than just hoping he would get through every day. The fundraising went well and the garden project started at the end of July last year. The main landscape and construction of the garden was completed but due to Autumn bringing not such good weather and a lack of funds there is outstanding work to be completed in the garden. My aim is to add some sensory items for Oliver and a planting area that Oliver and his sister Jasmine can enjoy together.
I am also continuing my fundraising in order to purchase monitoring equipment for Oliver’s overnight care, this will mean he is safe at night and not as reliant on a person being with him all the time. We have carers in the house most of the time but hope as Jasmine gets older and as funds allow to buy monitoring equipment that this can be reduced to give us all a better quality of ‘normal’ family life. Equipment and therapy through the NHS is very limited and I have to fight on a daily basis to obtain even the most basic items for him. I have had to undertake several legal cases via public funding to ensure Oliver’s voice is heard through me and that his basic schooling and care needs are provided for.
I am extremely passionate about Oliver’s Army, I made a promise to myself when Oliver survived to give him the best quality of life I possibly could. Sadly I have to look at Oliver every day with the thought that this isn’t how he should be and that he will never know the life he should of had. He won’t ever be able to run or jump, he won’t ever be able to tell me if he’s scared, worried or frightened and he won’t ever grow up and leave home to experience any kind of independent life. It breaks my heart to know all of these realities but I have to carry on and make his life the best it can be. He is my whole world and I will fight and fight for him to make sure his life is fulfilling, enjoyable and fun and is as pain free (as possible).
Oliver will always need me and the rest of the family for daily support and encouragement but also to fight his cause. The costs associated with raising a child with Oliver’s needs are huge and ultimately his quality of life will only be improved by having funds to provide all of the therapy and equipment needed to do so. Equipment costs run in to thousands of pounds and funding is not provided for even the essentials let alone any extras.
Please support us............
Organizer
Rachel Taplin
Organizer
