Endocrine Abstracts

For a parent, there is no worse fear than losing a child. But what if you were told that you weren’t going to lose your child physically but they will be changed for the rest of their lives, their obesity would make them unrecognisable physically and their personality, character and identity would be gone. Your suffering and grief would have no limit, no rest and no escape. To watch your child suffer everyday and have no solution, no answer and no means to bring her back. When Ivy was diagnosed with a craniopharyngioma at the age of 4, she started a journey that would result in exactly this, that would leave her hating herself and her body. It would also leave her siblings and parents broken and hanging together by a thread. Worst of all it leaves you asking the worst of questions ‘why has her survival left us with grief instead of joy?’ Today our family are on a quest for solutions which took us to make drastic and life changing steps. In 2024 we moved to my wife’s native Switzerland where we are pursuing the drug Setmalantide through Rythym pharmaceuticals. Our hope, is that one day we will bring Ivy home again.