The boy and the girl were eighteen years old when they met on social media in 2008.
As well as being American teenagers, they both suffered from cystic fibrosis (CF); a genetic disease which they were both born with.
A cruel disease that causes a build up of sticky mucus in the lungs, digestive system and other body organs.
People with CF often look ‘healthy’ but a large part of their lives is taken up with physiotherapy and having to use a nebuliser to disperse the mucus.
The mucus can lead to chronic infections and the need to be given in-patient treatment in hospital.
Many people with CF have to take a cocktail of medication to keep their symptoms under control – and often that isn’t enough.
So these two young people had already been battling against diseases when they met online.
He was in hospital at the time and she was at home but having a difficult time with her breathing.
Whilst social media often gets the blame for stalking, harassment and sending out the wrong messages, for these two young people, it gave them the opportunity to share experiences, to understand feelings that those around them could not comprehend because they weren’t teenagers with CF.
Not surprisingly, they grew closer despite the physical distance between them.
In time that closeness developed into love.
Another cruel aspect of CF is that the risk of infection is even higher between CF sufferers.
The girl knew about this. Her consultant had emphasised this risk to her throughout her young life.
The boy she fell in love with on social media had an added disadvantage; he had a particularly dangerous infection that could pose a risk to the girl’s life.
The people around them knew about their love but also knew that meeting in person could threaten both their lives.
The girl took a decision; she wanted to meet the boy in person – whatever the risk.
He drove for six hours to meet her.
The magic became a reality and they married in 2009.
Their health deteriorated.
They both had to give up work and by 2014 lung transplants were necessary to prolong their lives.
The boy had his first, and despite the chronic infection that complicated his CF, it was a success.
The girl had to wait and then cope with the devastating news that her Medicare insurance had run out and that she would have to leave hospital for sixty days in order to qualify for more treatment.
But she was too ill to stay out of hospital and had to rely on public medical insurance back in her home town.
Away from her husband and away from the large hospital that was experienced in treating her condition and doing lung transplants
Red tape prevented them from being together.
Red tape prevented the girl from getting the medical support she badly needed.
They drew up a bucket list of things they wanted to do:
- to drive through every state
- to learn another language and visit the country where it was spoken
- to write a book together about their young lives
- going shopping together
- watching TV side by side on the sofa
Friends set up a crowdfunding page to pay for the girl’s transplant.
She is still waiting.
Her husband was admitted to hospital and died in September 2016.
Red tape ruined two young lives and cut short their happiness.
In England in the 1940s, the National Health Service was created to provide a free medical system for all ‘from the cradle to the grave’.
The Conservative government are trying to sell the NHS to private providers; hell-bent on destroying a service that has saved so many lives, in order to line their own pockets.
Save our NHS so that this kind of cruelty won’t happen in our country.
Cut the red tape.