A little bit about me and my family:
In Jan 2010 my eldest child, Olivia, was almost 9 years old, outwardly a very healthy, “normal” child, who loved dancing and singing, she was though experiencing quite severe and rapid sight loss. We had some tests carried out at the hospital and were delivered some devastating news; Oliva was diagnosed with a condition called Juvenile Battens Disease (information leaflet attached). This is a progressive Neuro degenerative disease that currently affects around 30-40 children and young people in the UK.
Olivia has just turned 24 and in the last 14 years has lost the ability to talk, walk, is completely blind, tube fed and suffers from epileptic seizures, she requires 24-hour care which my wife and I obviously do along with Olivia’s carer.
Each year since 2010 I have tried to raise awareness of this awful condition and along the way raise a bit of cash for the various charities that support families like mine, running half marathons, jumping out of aircraft, having black tie events and even convincing friends to do the Full Monty in front of 400 people. This year it’s another physical challenge and the Mission Systems team have “volunteered” to take part in it with me raising some cash for Bluebell Wood Hospice (see below).
Bluebell Wood https://www.bluebellwood.org/ is a Children’s Hospice located in Rotherham which offers respite for terminally ill children and young adults, along with providing support to siblings and extended family. This place is close to my heart (as you can imagine), and the rest of the Mission Systems Team have kindly agreed to support me in my effort to raise some much-needed funds in their name.
Bluebell Wood offers occasional respite for Olivia, to give her a break away from us as well as allowing us to do normal family things with Olivia’s siblings. In addition to providing respite for Olivia, they also have family events, siblings’ groups, family parties/BBQs and offer trips away for families, so I’m sure you’ll agree it is a very worthy charity.
Like I previously said, each year I try to raise awareness of Battens Disease whilst also bringing in a little cash for various charities along the way, and I hope by you reading this story I have achieved at least one of those things.
A little bit about me and my family:
In Jan 2010 my eldest child, Olivia, was almost 9 years old, outwardly a very healthy, “normal” child, who loved dancing and singing, she was though experiencing quite severe and rapid sight loss. We had some tests carried out at the hospital and were delivered some devastating news; Oliva was diagnosed with a condition called Juvenile Battens Disease (information leaflet attached). This is a progressive Neuro degenerative disease that currently affects around 30-40 children and young people in the UK.
Olivia has just turned 24 and in the last 14 years has lost the ability to talk, walk, is completely blind, tube fed and suffers from epileptic seizures, she requires 24-hour care which my wife and I obviously do along with Olivia’s carer.
Each year since 2010 I have tried to raise awareness of this awful condition and along the way raise a bit of cash for the various charities that support families like mine, running half marathons, jumping out of aircraft, having black tie events and even convincing friends to do the Full Monty in front of 400 people. This year it’s another physical challenge and the Mission Systems team have “volunteered” to take part in it with me raising some cash for Bluebell Wood Hospice (see below).
Bluebell Wood https://www.bluebellwood.org/ is a Children’s Hospice located in Rotherham which offers respite for terminally ill children and young adults, along with providing support to siblings and extended family. This place is close to my heart (as you can imagine), and the rest of the Mission Systems Team have kindly agreed to support me in my effort to raise some much-needed funds in their name.
Bluebell Wood offers occasional respite for Olivia, to give her a break away from us as well as allowing us to do normal family things with Olivia’s siblings. In addition to providing respite for Olivia, they also have family events, siblings’ groups, family parties/BBQs and offer trips away for families, so I’m sure you’ll agree it is a very worthy charity.
Like I previously said, each year I try to raise awareness of Battens Disease whilst also bringing in a little cash for various charities along the way, and I hope by you reading this story I have achieved at least one of those things.