2016 started off as the happiest of my life. I was pregnant, we were expecting a gitl. Finally after 4 years of heart ache, worry, stress, and sadness our dreams of having a family were finally becoming real. Then, one day at the end of March, at 34 weeks, our final ultrasound became the door to hell that opened and what would follow would easily the most difficult experience I have ever had in my life. They found stains on her little heart. Then countless visits to Vall d’Hebrón hospital with various experts, and tortuous waits in waiting rooms with happy mums to be revealed that she had a rare disease called Tuberous Sclerosis that had spread to her brain. This would mean a life in and out of hospitals and a wide spectrum of symptoms such as autism, behavioural issues, learning disabilities, organ failures, epilepsy...not a life at all by any standards. We took our time and weighed our options with great care and compassion. Our hearts and minds wer...
