Arlos army

Arlo Paton, you are the strongest most bravest little person I have ever met, you have taught me how to be strong on the hardest days. I just wish I could take it all away for you! I don’t know what the future holds for you my boy but I do know we will be fighting with you every step! Everything your daddy and I do is always for you, our precious baby boy

It may have taken some months but we are finally ready to share Arlos story! For those who don’t know last September our world was flipped upside down when we received the most heartbreaking news a family could receive, when Arlo was diagnosed with Leukodystrophy which is an extremely rare brain disease!

Most people, like us have never heard of leukodystrophy. Leukodystrophy affects myelin, the protective covering on nerve cells in your brain and spine. Leukodystrophies cause a progressive loss of neurological function in infants, children and sometimes adults. The diseases are often fatal.

Throughout it all Arlo has been a trooper and taken it all in his stride, no child should ever have to go through any of this! Unfortunately we are still waiting for our genetic testing results to come back. So for now we don’t know exactly what type of leukodystrophy Arlo has got and what the outcome will be. So we sit here and pray everyday for a miracle to land our way!

Although the last few months have been a nightmare for us as you can imagine there are just so many questions, we will forever be grateful for Arlos team of doctors, the staff within ward 19 & 20 at university hospital Wishaw and the staff at the royal hospital for children Glasgow! But we would be totally lost without the help and support from one charity, Alex TLC provides invaluable support and information to people affected by leukodystrophy.

There are more than 100 different known types of leukodystrophy, including some so rare they only affect one or two individuals. We are the only charity in the UK that provides support and information to people affected by any of the leukodystrophy conditions worldwide.

This year Andrew and I are making it our mission to live everyday for Arlo creating the best memories for him! But to also try and raise as much money as possible for Alex TLC, as a small charity any help will be so beneficial to families just like ours! Please keep a look out for our exciting plans! We are hoping all our loved ones will happily join us in sharing arlos story as far as possible with #arlosarmy