Amy Dryden
End NF fundraising
Fundraising for Nerve Tumours UK
Story
Thanks for taking the time to visit my JustGiving page.
My son Ollie was diagnosed with neurofibromatosis type 1 (NF1) three year ago aged just 4. We went to the hospital with a suspected nut allergy and came out with a diagnosis that we couldn't pronounce and a lifetime of worry. Neurofibromatosis is a genetic condition causing tumours to grow on nerves throughout the body. It can cause blindness, deafness, learning disabilities, mobility problems, disabling pain, and cancer! Not long after the initial diagnosis we also found out Ollie had bilateral optic nerve gliomas (brain tumours located on each optic nerve) absolutely nothing in life can prepare you for such news and now three years on the news is just as raw. Ollie also has severe hypermobilty syndrome, low muscle tone, irritable bladder, poor speech, learning difficulties, poor coordination and balance problems. He is in pain daily, suffers fatigue and bad headaches. He can't walk far, can't keep up with his friends and can't even make it to the toilet without medication to help. Yet he is the kindest most caring little boy! He strives to make people laugh and will help anyone in an instant. As a family the news hit us hard, all Ollies little awkward traits were actually replaced by medical diagnosis and it was hard to think of him in the same way. Now three years on we look at Ollie as being Ollie, the kind big brother, the funny cousin the loving son. neurofibromatosis is a progressive condition Ollie won't ever get better but unfortunately he can get a whole lot worse. One baby every day in the uk is born with NF yet the condition is rarely heard of, 25000 people living with this cruel condition!
The Neuro foundation helps families like ours, in particular we find support through the NF nurse specialists they fund. Ollies nurse has helped us from the start, learning us about NF, offering support to Ollies schools and teachers, communicating with doctors to enable the best care for Ollie and much more! The month of may is NF awareness month so my family, friends and myself are hoping to not only raise awareness but also funds for this much worthy charity.
We are hosting a range of charity events throughout may including sponsored walks, bag packing, coffee mornings and pj days.
My uncle Neil, and his son harry (10) will also be competing in triathlons and have kindly offered any money raised to also go towards our fundraising. Harry will be taking part in 8 triathlons within 5 month; traveling throughout England, wales, Ireland and France! Neil will also be competing in the Olympic triathlon in June! Any donations would be massively appreciated!
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
My son Ollie was diagnosed with neurofibromatosis type 1 (NF1) three year ago aged just 4. We went to the hospital with a suspected nut allergy and came out with a diagnosis that we couldn't pronounce and a lifetime of worry. Neurofibromatosis is a genetic condition causing tumours to grow on nerves throughout the body. It can cause blindness, deafness, learning disabilities, mobility problems, disabling pain, and cancer! Not long after the initial diagnosis we also found out Ollie had bilateral optic nerve gliomas (brain tumours located on each optic nerve) absolutely nothing in life can prepare you for such news and now three years on the news is just as raw. Ollie also has severe hypermobilty syndrome, low muscle tone, irritable bladder, poor speech, learning difficulties, poor coordination and balance problems. He is in pain daily, suffers fatigue and bad headaches. He can't walk far, can't keep up with his friends and can't even make it to the toilet without medication to help. Yet he is the kindest most caring little boy! He strives to make people laugh and will help anyone in an instant. As a family the news hit us hard, all Ollies little awkward traits were actually replaced by medical diagnosis and it was hard to think of him in the same way. Now three years on we look at Ollie as being Ollie, the kind big brother, the funny cousin the loving son. neurofibromatosis is a progressive condition Ollie won't ever get better but unfortunately he can get a whole lot worse. One baby every day in the uk is born with NF yet the condition is rarely heard of, 25000 people living with this cruel condition!
The Neuro foundation helps families like ours, in particular we find support through the NF nurse specialists they fund. Ollies nurse has helped us from the start, learning us about NF, offering support to Ollies schools and teachers, communicating with doctors to enable the best care for Ollie and much more! The month of may is NF awareness month so my family, friends and myself are hoping to not only raise awareness but also funds for this much worthy charity.
We are hosting a range of charity events throughout may including sponsored walks, bag packing, coffee mornings and pj days.
My uncle Neil, and his son harry (10) will also be competing in triathlons and have kindly offered any money raised to also go towards our fundraising. Harry will be taking part in 8 triathlons within 5 month; traveling throughout England, wales, Ireland and France! Neil will also be competing in the Olympic triathlon in June! Any donations would be massively appreciated!
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.