Help My Mom Spend Time With her Dying Son

Hello,

My brother was born with a rare genetic disorder called Wilson’s disease that prevents his liver from filtering copper out of his system. It has some behavioural manifestations, but because he was diagnosed early on with Asberger’s Syndrome and ADHD, they ended up getting missed, so the disorder was left untreated.

For years, medical professionals struggled with the complexities of my brother’s multiple conditions, failing to understand how to handle them and leaving my mother with little to no help. She sacrificed everything and worked herself to the bone trying to save him without knowing that doing so would be impossible so long as the copper was building up in his brain—and so it did, until he was seventeen, and he started to die from it.

Wilson’s disease typically kills you through one of two avenues: the copper buildup causes such extensive damage to your liver and brain that one of the two of them shuts down completely. When my brother was seventeen, although he had level four liver failure, it was his brain that began to shut down, resulting in him becoming fully paralyzed for a few months. Fortunately, with treatment, he managed to regain most of his mobility, but now, fifteen years later, it is his liver’s turn to shut down.

Last month, my brother was diagnosed with terminal liver failure. Even if he survives long enough to get a transplant, he may die in surgery because he also has Hereditary Hemorrhagic Telangiectasia (HHT). Already, the interaction of the two disorders has almost killed him twice in the past few months.

My brother’s entire life has been defined by his mental and physical health problems and the bullying and isolation that they got him, and before he could even begin to rebuild his brain, his body began to break down. Now, facing death, he should be surrounded by loved ones, living his life to the fullest and making the most of the time he has left, but instead, because of COVID (and all of you out there who refuse to wear masks), he is trapped at home, alone with thoughts of his looming death.

If my brother is going to be dead soon, then I want him to at least spend his last months with the person that makes him feel safest: his mother... but she cannot afford to take time off work, and so unless we get enough donations, she will waste her dying son’s last moments away from him, and he will suffer alone.

Please help my mother go on sabbatical so that she can be with her son as he faces his death. After all they've both been through, it's the least they deserve.

Thank you,

Alison