As many of you know our beautiful baby boy Brín was diagnosed with a very very rare disease called Cystinosis just last August. So rare it only affects 2000 people all over the world 13 of whom are patients of Temple Street with Brín. To date there is no cure for this illness. As parents we have vowed to do everything we can to help and support other families out there and hope that some day SOON there will be a cure.
For the month of August to mark it being one year since Brín was diagnosed and to acknowledge his many trips to Temple Street, as parents we are going to walk/run the distance from our front door to Temple Street and back 534 kilometres in 28 days (20k a day).
We ask that if you could support us by donating anything at all on using this link and typing “Walk to Temple Street” in the text box. Every penny will go straight to Cystinosis Ireland.
You can track our progress using this link – Claire & Donal fundraiser for Cystinosis Ireland.
As of Friday 23 July, the total raised is a staggering €15,479.
Thank you so much for all your support for our challenge.