Weʼve raised £150 to help raise funds for Ollies Army Helping Ollie and Amelia live a more comfortable life with Battens Disease.
- Funded on Sunday, 25th August 2019
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I have set myself a challenge to run the Manchester 10k on Sunday 19th May.
After seeing some really emotional posts about two beautiful children suffering with Battens disease, I have decided to run to support their extremely deserving charity, Ollie's Army.
In their Mother's words
"The date the 13th February 2015, a day that will stay with us forever. I can remember the colour of the walls, even the smell. As we sat in that small room with Ollie on his daddy’s knee we were told that our child has Battens Disease, that there is no cure and that life expectancy is between six and twelve years. Ollie was just four years old! Our world fell apart in that moment. We were told Battens Disease was so rare that they had never come across a child with it before.
A few weeks later we received a call from the genetics clinic asking us to come in to test our older boys, who were unaware of anything that was going on. On arrival we were ask to leave the boys in the waiting room with Mikes Dad.
For the second time our world fell apart as we learnt our beautiful princess also had Batten Disease. Amelia had only just turned two, she had been hitting all her milestones, to look at her you would never know. Walking out to our boys in the waiting room, trying to hold it together and act normal has to be one of the hardest things we have ever had to do. The boys were not tested that day; there was no sane reason for them being there."
Batten Disease is fatal genetic disease which damages cells causing the person to suffer progressive neurological impairment.
Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important.
Please please dig deep and donate what you can.
- 6 months ago
Jessica T6 months ago
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May 21, 2019
Donation from my Dad 💖 thank you xx
May 19, 2019
This was donated by a lovely man at the train station who saw my top with "Ollie's army battling battens' and asked to donate as this is such a good cause. I nearly cried. Thank you so much
May 19, 2019
Good luck 😉
May 15, 2019
Do your best Jess, from Stu and Dad
May 13, 2019
Apr 27, 2019
Good Luck 🏃🏼♀️ xxx
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