100 Miles In Your Shoes

“100 Miles in Your Shoes”

We are raising money for our brave little soldier, Oscar, and Acorns Children’s Hospice charity who provide specialist palliative care for life limited and life threatened children and young people across Birmingham and the West Midlands.

After many years of uncertainty, and the development of various conditions, in February 2020 our then 8-year-old son Oscar was diagnosed with Batten Disease, a horrific degenerative neurological condition. Over the last 12 months this disease has taken Oscar’s sight, he has developed epilepsy, his motor skills are failing, and he has lost his ability to swallow so now has a gastric feeding tube. Now 9 years old, we find ourselves on a journey dealing with a disease that is equivalent to Childhood Dementia and we know eventually he will become dependent on 24-hour specialist care. We don’t know how long we have with Oscar as most children lose their battle with this life-limiting disease in their teenage years.

We have been sharing Oscar’s story since we learned of his diagnosis in 2020 on www.bemoreoscar.com and we have received so much love and support along the way. Throughout this awful process we have received so much support and guidance from Acorn’s Children’s Hospice, something we never imaged would be a reality. Our Acorns Family Support Worker Fiona has been with us and held our hand since day one and she’s made our life so much easier for us as a family and so have all the nurses. We know how important and how vital Acorn’s is to us as a family and to Oscar, both now, and as time goes on.

Acorns is a very very special place and a place that’s close to our hearts. It cost Acorns £27,000 per day to provide its lifeline care and support, the bulk of which comes from fundraising and donations so we want to do all we can to help ease the financial burden. In the past year, Acorns has cared for over 800 children and more than 1,000 families, including those who are bereaved. They need our support, and we want to give back to them for the tireless work they do for families in need.

So, we are pushing ourselves, as a united front, in a mammoth Challenge to raise money for Acorns Children’s Hospice and also to buy a vital piece of equipment that Oscar needs at home which can’t be provided as part of any special need’s adaptation requirement.

THE CHALLENGE - Over 3 days, between the 26th August through to 28th August, we are walking 100 miles, none-stop, from Oscar’s home ending at Birmingham Children’s Hospital. Not only will we be walking the 100 miles, but a number of our fundraising party will also be Blindfolded!!! On our travels around the Birmingham area, we will pass key locations that hold significance in Oscar’s life and journey, including his primary school, Acorns Birmingham Children’s Hospice and many many places and people that’s have supported ‘BemoreOscar’ over the past year and a half so we can thank you all personally.

This challenge is for us all to walk in Oscar’s shoes. Doing the challenge continuously means we will deal with sleep deprivation and fatigue as things stop functioning correctly so this will represent the mental aspect of Oscar’s disease and the blindfold will mirror his blindness.

We know this will push us to our limits both mentally and physically, but this is nothing compared to what Oscar is going through every day of his life. Throughout Oscars illness progression, and all the things he has to go through, he rarely complains and manages to muster up a smile. Oscar’s 2nd cousin once used the expression 'Be More Oscar’ when describing how we should all look at life in a positive, upbeat way. The way Oscar does. This couldn’t be more fitting, so now we look to Oscar for inspiration and strive to #bemoreOscar

Your donation will not only give much appreciated funds to Acorns Children’s Hospice, but it will also allow us to purchase a new hydrotherapy bath for Oscar. This piece of equipment will cost us over £12,000 but will give him the home therapy his body needs to keep him safe and well so is it essential to give him the best care.

If you wish to donate, then we all can’t thank you enough and will make sure we continue to keep you updated on Oscar journey on our dedicated Facebook page where you can see us preparing for the big event and follow us live over the three day challenge! Please visit https://www.facebook.com/bemoreOscar/ where you can Reach out, Subscribe, Like, Share or Get Involved.

Thank you for reading, stay safe, please #bekind and most of all #bemoreOscar

Much Love

Alex, Dani, Oscar & Charlie

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