"We were basically given a life sentence, this progressive incurable disease was going to take our only child. We were given a piece of A4 paper, and essentially told to make the most of the time we had."
"We were collapsed outside - we were told our daughter is going to die. In that moment we both were broken, our lives had been shattered."
"We were in a complete state of shock and left feeling like what do we do now? Our life had changed forever and we felt alone."
Sophia Scott was diagnosed with Sanfilippo syndrome before her fourth birthday, leading to severe developmental delays and a prognosis of limited life expectancy. At 15, she cannot speak or walk unaided. Her parents, Darren and Amanda, are separated but share caregiving responsibilities. Darren balances his job with advocacy for awareness of the condition. The family received minimal support after the diagnosis, leaving them devastated and feeling isolated. They were advised to make memories, but the emotional toll has been profound as they navigate Sophia's deteriorating health.
Read at www.bbc.com
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