One such couple - Jayne and John Glynn, are friends of mine. They have had to deal with the constant fear and the constant fight against the disease for the past 3 years. Their gorgeous boy Gavin has stolen the hearts of doctors, nurses and the community he lives in as he has bravely battled this illness for much of his short life.
As parents we all know we would do everything within our power to help our child if they were sick, but what if you were told there was no more treatment options available in your own country? That for any hope of recovery you would have to travel to Texas at a cost of €350,000?
Gavin and his parents' last hope is to make that journey and so have launched an appeal #myboy to raise the money. They travel to Houston on 23rd June to meet the surgical team at the hospital to discuss the treatment. This initial meeting will cost $25,000. And the follow up operation another $400,000.
The cost is both shocking and frightening for Gavin's parents, but they are determined to do everything possible to ensure Gavin gets the lifesaving treatment he needs - and that's where all of us and social media come in.
A little donation from a lot of people is all they need.
To get involved all you need to do is this:
In Ireland - Text GAVIN to 50300 to donate €4 to this special Appeal.
Rest of the World - Go to http://teamgavinglynn.ie/ and click on Donate.
Then take your own selfie with your kids, cousins, nieces, nephews, dogs or whoever is on hand and share on Facebook, Twitter, Instagram or where ever you can with the hashtag #myboy.
Finally, to meet Gavin and his dad please take just 1 minute to watch this video and then 1 second to imagine yourself in their shoes.
Then simply share your selfie and how to donate as far and wide as you possibly can.
It will make a difference.
For more go to Gavin's Journey