A widow who lost her husband to a rare genetic disorder is campaigning for awareness of the illness to be raised.
Charlotte Goode, 37, from Clayton-le-Woods, near Chorley, lost her husband Stuart to Alpha-1 Antitrypsin Deficiency in August 2009.
Now, the mum-of-two, is urging people to sign a petition calling for the establishment of a specialised service for Alpha-1.
The online petition has been launched by the Alpha Alliance and Charlotte is backing it following her family’s experience.
Charlotte said: “He was 36 when he died. He was diagnosed two and a half years earlier.
“Up until his diagnosis he had lived a happy and healthy life although he was very ill shortly after he was born.
“His illness was painful, stressful, confused and his treatment extremely poorly managed.
“Earlier diagnosis could have prevented his death or at least prolonged his life.”
Alpha-1 Antitrypsin Deficiency also known as Alpha-1, A1AD or AATD is a deficiency of alpha-1 antitrypsin (AAT) in the bloodstream.
AAT is an enzyme produced in the liver to help protect the tissues of the body during infections.
The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate.
This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.
Charlotte is originally from Lancashire but met Stuart whilst studying in Leicestershire and they set up home there.
It was after her husband’s death that Charlotte moved to Clayton-le-Woods, with their sons Bobby, six and Ted, five, to be closer to her family.
Charlotte said: “We are just trying to let people know what is going on, there’s people who are struggling with this condition.
“They are not getting the treatment because it doesn’t exist.”
Charlotte also hopes that by spreading the word of the campaign and the petition people will join together to share their experiences and share best practice advice to help families struggling with the impact of the illness.
So far the petition has been signed by more than 1,500 people.
To sign the online e-petition visit: http://epetitions.direct.gov.uk/petitions/39732
To keep upto date with the Goode’s story search ‘Bobby and Ted’s story’ on Facebook and ‘like’ their page.
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