Our son Tyler was diagnosed with Alpha-1 when he was just 4 weeks old. We had never heard of it before and were very scared hearing about what his future will be like. When Amber was born they had to test her 4 times as the results kept being messed up. She was 6 months old before we found she was not producing the right amount of Alpha-1 that a normal person was. Both Emma & I were also tested and both of us have half the faulty gene so also like Amber may be affected in the future. Tyler though is guaranteed to have issues has he has both our faulty genes. There is no cure for Alpha-1 and while in America and some other countries that have augmentation therapy which can slow down the effects, here in the UK there is nothing.
The charity Alpha-1 Awareness UK were there for us, sending us booklets which explained what the condition was and things to do to try to help Tyler. The NHS gave us nothing apart from fear and gloom. After years of supporting the charity from the side-lines, we were invited to join the Board. Many years later and we are now in higher roles in the charity, but at the end of the day, we are still parents of a very ill child. He looks like a normal child, he acts like a normal child and he doesn’t have that much time off school due to Alpha-1. His liver though was degrading and his lungs were being attacked even while he was in the womb.
Please help support us by donating to our charity to help make a difference. The charity makes donations to the people who are doing the vital research into finding a cure. We also produce booklets that we send all over the UK for free to people who are diagnosed with Alpha-1 and are very scared. We also send digital versions of our booklets to people outside of the UK to help them.
We desperately need a cure, but until then, we need to help support those who are newly diagnosed and are terrified about their children & their future as well as their own. Please help my children and all other Alphas.
TrekFest is an annual event in Derbyshire which is a 25k hike across some of the challenging parts of the Peak National Park. This challenge will be no walk in the park, it has been made to push people and show who is made of harder stuff.
We leave the TrekFest Village at the Hope Show & Sheepdog Rials and head straight through Castleton. We soon get a feel of the beautiful Peak District as we climb up and over Hollins Cross, to reach our first checkpoint in Edale. Following a quick pit stop we walk through Edale and join the Pennine Way which will lead us up and over Kinder Scout. Once we have summited we will make our descent into Hayfield for our second checkpoint and food stop and then continue following the Pennine Bridleway to our third checkpoint in the Peak Forest. The last section of the route leads us through fields to the village of Bradwell and continues through the villages of Brough, Shatton, and Aston before returning through Hope and back to the TrekFest Village.
If you are interested in joining our team, drop a message to us at http://www.alpha1.uk/contact-us/ and let us know. We will be camping there from Friday to Sunday morning and want to make a weekend of it.