Runbir
“Runbir comes from a family that are a “team”. We loved and looked after him in his final years as the best team he could have had on his side.”
Personal stories help highlight the issues faced by leukodystrophy patients and their families, as well as demonstrating how support from Alex TLC can help.
“Runbir comes from a family that are a “team”. We loved and looked after him in his final years as the best team he could have had on his side.”
“Since my diagnosis in May 2016, I have been supported well by my employer. Despite the challenges, I am still working full-time.”
“Having Winnie completed me, loosing her has broken me.”
“I found out I had AMN through receiving a clinic letter in the post sometime in July… not an in-person appointment or anything personal like that, just a letter confirming the diagnosis.”
“Tuesday 6th September 2022, our little boy Albie was born 3 and a half weeks early, weighing a tiny 5lb 14oz.”
“I have learned that no one knows your child better than you, and if something doesn’t feel right then listen to your instinct.”
“…both of her sons have survived into adulthood against the odds”
“I am determined to make every day count”
“He has a big smile and a warm heart. I’ll never stop advocating for his needs.”
“…we are focusing on bringing her as much joy as possible”
“Steven has become an active member of the Alex TLC community…”
“…he finds comfort in talking to those who can relate to his struggles”