Thanks for taking the time to visit my JustGiving page. Here is a little bit of my story......

My brother died 2 and a half years ago on 22nd March 2014 after battling alpha-1 anti-trypsin deficiency (A1AD) for about seven years. 

Alpha-1 anti-trypsin is a protein which is produced in the liver. It is absorbed into the blood stream and travels to the lungs where it protects them from infection. However, with A1AD, the protein is misshapen and gets stuck in the liver. The blood therefore has a deficiency and the lungs don't have the protection they need against infection. Also, by getting stuck in the liver, cirrhosis and other liver disease is common.

It is a relatively new find in the field of genetics and as such, not many doctors have been trained to look for it. It can be tested for with a finger prick of blood so no need to for invasive tests of even a syringe full of blood! Many adults may have A1AD and not be aware. It is as common as Cystic Fibrosis yet is highly under diagnosed. Sometimes it is misdiagnosed as adult onset asthma or at best COPD. It can manifest itself in many ways including jaundice in new born babies, recurrent chest complaints and other infections. But it is worth having the test as there are options of lung and/or liver transplants for some sufferers.

Because it is genetic condition, we have identified that far too many of my family have died from lung disease in the past, including our Mum, Geraldine Smoker, in October 1999, just 5 days after my thirtieth birthday. It is only through Paul being tested by a vigilant lung specialist whilst he was in intensive care on visit, that we have found out about this. And the way genetics work means that at best I am a 'carrier'.

Usually, being a carrier of a genetic disease means that the faulty gene may be passed on to your children. This is still the case with A1AD. But with this disease it also means that I will have a deficiency of the protecting protein in my blood, albeit the levels will not be as low as someone with two faulty genes. But until I fall ill, I have decided not to be tested and have no idea at what level my Alpha-1 antitrypsin lies. 

There is no cure.

As people with A1AD, there are things we can do to protect our lungs which include stopping smoking, avoiding infections of any kind (not just coughs and colds), eating healthily, losing weight etc. We can also protect our livers by not drinking alcohol or using drugs. It is these guidelines that I am trying to teach to Kate and Annie so that they can manage their risk of inheriting the faulty gene from me.

Despite giving up smoking for good in May 2011, my lung condition hasn't really improved. I still wheeze, have a 'smoker's cough' and find exercise difficult. I am Class II obese, have a split pelvis from child bearing, I drink a little rum on occasions (!) but I have been on a mission since 2015 to try and turn around my chances of dying from this awful illness. 

And many of you will know I've never been one to shirk a challenge!

I completed Silverstone Half Marathon in March 2015 then had a nasty car accident while motor racing and haven't been able to do much running for about a year. So, here I am again, several weeks into a training plan for the Windsor Half Marathon on 25th September 2016, three days after my brother's 2.5 year anniversary. Jim has also agreed to run the race and for those of you that know him, you will understand that this is going to be tough for him. It won't be pretty. It won't be quick. It will be tough. And although Jim runs quicker than me, I will probably come over the line last (as usual!) But it's the least we can do to give back to such a wonderful group as the Alpha-1 UK Support Group.

The group relies on charitable donations and has no outside funding. Their knowledge, understanding and compassion through the whole process, from Paul's diagnosis to his death in the space of a few short months, and beyond has been incredible. I have made close friends with many of the members but have only met a few. All people involved are sufferers themselves (or family members and carers of those that are) and provide their time free of charge in the hope that the message will spread and fewer people will have to suffer the truly horrific death that A1AD entails.

So please give a little if you can, and Jim and I WILL complete this race if it's the last thing we do. I owe this group so much.

Thanks for reading.

Em xx

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