Sam Dance and Laim Hynes have decided to take on the challenge of cycling 105miles in a day around London, where we will visit all 20 football stadiums on Sunday May 12th to help raise money for an amazing cause. We are raising money to help Local 12 year old Archie Whitby Foundation to tick of some of his bucket list to create some amazing family memories while they have the time.

Here is the latest update from Archie’s family.

I’m writing this post as I would like to take the opportunity to update all of Archie’s followers on his current health, and what’s been happening since May. Over the last 4 months we have been having lots of meetings with all of the professionals who help with Archie. His Pompe disease is now affecting his brain. This means damage to the brain stem and certain areas of the brain. The doctors think that this is what is causing seizures and also drops in his heart rate and his temperature.

We have recently had to make the difficult decision (with the advice from professionals) to agree to a DNR (do not resuscitate) for Archie. This is because chest compressions could cause  broken ribs or further brain damage. We asked the doctors to be completely candid with us and give us a rough prognosis for Archie’s future, sadly the damage Pompe is having on his brain is irreversible and cannot be helped by the enzyme replacement therapy. This means that the progression of the damage will take Archie’s life within the next two years

The harsh reality of our situation is that even though Archie could have another two years, we have been warned that Archie could potentially develop sepsis if he was to become unwell with even just a simple virus.

They have also warned us that it is possible that the damage to the brain stem will cause his heart to slow down and stop beating completely. If this were to happen there will not be any intervention in getting his heart to restart. You will see that we have started doing a lot more fundraising for Archie recently, this is because there’s a few things that we would like to do with him in the time that we have left.

Making memories is all that is important to us now as a family but as we all know, things can be very expensive.