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.
Very well done all!
Amazing effort - well done x
1st the worst, 2nd the best! Well done team Inzpire!
Well done everything amazing! Love Jo, Simon, Alfie & Thea x
Well done everyone, love Adam & Anne-Marie x
From my Auntie Mary x
Great day!
Well done Russ!
Well done everyone, great cause.
Great work lads! Up the owls
Good luck to all!
Amazing worthy cause-donation from Duncan Wren
Best of lyck mate
Good luck and hope you do well
Good luck everyone!
Good luck tomorrow Russ and the rest of the team, sure you will smash it ??
Russ, Best of luck to you and the team, I hope you smash the fundraising total and keep raising awareness for this amazing charity.
Roger Stakemire
Well done Russ, Olivia's story is very sad but I am glad that you are able to receive so much help from your wonderful charities.
Good luck everyone :-)
Great event for a great cause :)
Good Luck team!
Best of luck Russ and the Team!
Get it guys...
Go Team Inzpire. Good luck everyone!
Good Luck Everyone!!!!
Amazing cause! and hope you all smash the race this year!!
Go Team Inzpire!
Good luck Russ!
Have fun
Good luck
Gu on Russ ??
Inzpire
Great cause!
Beautiful heart felt journey. Thank you for sharing Russell
All the best for the race and the target.
Win! Win! Win!
Sad that I can't join in this year...but good luck everyone...it's all for an amazing cause!!!
Absolutely in awe of your strength and dedication. Wishing you calm waters for the race with heartfelt support - Sooty
Great cause, good luck!
Good luck.
I'll kick it off
Very well done all!
Amazing effort - well done x
1st the worst, 2nd the best! Well done team Inzpire!
Well done everything amazing! Love Jo, Simon, Alfie & Thea x
Well done everyone, love Adam & Anne-Marie x
From my Auntie Mary x
Great day!
Well done Russ!
Well done everyone, great cause.
Great work lads! Up the owls
Good luck to all!
Amazing worthy cause-donation from Duncan Wren
Best of lyck mate
Good luck and hope you do well
Good luck everyone!
Good luck tomorrow Russ and the rest of the team, sure you will smash it ??
Russ, Best of luck to you and the team, I hope you smash the fundraising total and keep raising awareness for this amazing charity.
Roger Stakemire
Well done Russ, Olivia's story is very sad but I am glad that you are able to receive so much help from your wonderful charities.
Good luck everyone :-)
Great event for a great cause :)
Good Luck team!
Best of luck Russ and the Team!
Get it guys...
Go Team Inzpire. Good luck everyone!
Good Luck Everyone!!!!
Amazing cause! and hope you all smash the race this year!!
Go Team Inzpire!
Good luck Russ!
Have fun
Good luck
Gu on Russ ??
Inzpire
Great cause!
Beautiful heart felt journey. Thank you for sharing Russell
All the best for the race and the target.
Win! Win! Win!
Sad that I can't join in this year...but good luck everyone...it's all for an amazing cause!!!
Absolutely in awe of your strength and dedication. Wishing you calm waters for the race with heartfelt support - Sooty
Great cause, good luck!
Good luck.
I'll kick it off
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.