His Wife Wants To Look Into Getting Their Daughter A Medically Assisted Death And He’s Telling The Internet He Yelled At Her Over This
A 40-year-old man is married to his wife, and together they have a 6-year-old daughter named Ellie.
Sadly, Ellie was diagnosed not too long ago with Sanfilippo Syndrome. “For the unaware, Sanfilippo is a form of childhood Alzheimers that is always fatal, and most do not make it to adulthood,” he explained.
“The average life expectancy is 10-20. When me and my wife found out, we were mortified.”
At first, doctors had diagnosed Ellie as having autism, and though he and his wife weren’t thrilled, they thought that was some news they could live with.
Autism was nothing fatal; they still would get to enjoy their daughter at the end of the day. But after she was diagnosed with Sanfilippo Syndrome, it completely devastated them, because it means Ellie won’t be here for much longer.
His wife began researching a medically assisted death for Ellie, and as soon as he found out, he let his wife know that wasn’t something he agreed with or supported.
He wants Ellie to be around for as long as possible, and she can still do so many things. She can still feed herself, and walk, and he thinks that if Ellie can do certain things on her own, they shouldn’t have to let her go.
He told his wife that if she decides to continue pursuing this option for Ellie even though Ellie isn’t showing any symptoms yet, he’s going to divorce her.
His wife genuinely feels he’s being “selfish” because Ellie is suffering.
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“I understand it must be very hard for my daughter, but it’s also hard to say goodbye to her when she’s still here and can still be able to breathe, eat, and walk with little assistance,” he said.
His family and his wife’s family really are divided on what they should do here.
Here’s what the internet had to say.
“This is an unbelievably difficult thing you’re dealing with and some yelling is probably unavoidable. Grief often manifests as anger.”
“You’re not wrong for wanting to hang on to your daughter as she is for as long as possible… but your wife isn’t wrong for wanting to make her inevitable end easier, when it draws close.”
“It’s better to make these decisions, consider doctors who will help, get a lawyer if you need it, etc., now when things aren’t urgent.”
“Waiting until the situation is much worse may result in unnecessary suffering for your daughter and stress for you and your wife.”
“Apologize to her. She’s grieving too. But also remember that this is not about your readiness to say goodbye; it’s about your daughter’s quality of life and comfort. So help your wife prepare. It’ll be good for all of you.”
“Sounds like you guys need to see a therapist to talk this out with. All of it. Someone who specializes in this kind of situation.”
“Children with Sanfilippo Syndrome do not suffer their whole life.”
“I do not know enough about this to give any advice but I know they still live a love and joy-filled life.”
“I know a boy who was 5 when I met him with Sanfilippo Syndrome and he is now 15. Happiest kid on the planet.”
“He has rough days, but his mother talks all about his journey and he is a happy person. He is non-verbal and mentally acts like a toddler, but finds such joy in everything he does and it is really beautiful to see.”
“He has lived well past his expected timeline as well, which is amazing as his family gets plenty of time to enjoy with him.”
“As someone with a tiny bit of understanding of the condition I don’t believe medically assisted death is appropriate for this situation.”
“It would be a different story if she was in pain constantly, but she’s not. Yes, instead of your daughter being able to do things that most children learn to do over time, she will digress.”
“But if she is loved and cared for properly, it will still be the best few years of her life. She is still able to spend time with you and make those memories.”
“However, I would have a longer conversation with your wife. Is she feeling overwhelmed by the situation and how much care is going to be needed?”
“Because if you look at the situation from your daughter’s point of view, this is all she knows, so make it the best 10-20 years that she has.”
“Having her parents go through a divorce or having her mom will her into death at a younger than expected age is letting her down. So you two need to work together to make her time here matter.”
“I’ve spent a lot of time around a child with Sanfilippo Syndrome. What a wonderful child she was. As you mentioned, her life was not long and she passed on her 13th birthday. I will say, getting to watch her grow and accomplish new tasks and milestones was a joy and just that much more special given the complications of their life.”
“Her mother at one point fully quit her job and moved to a completely different state with the family for this girl to be part of a study on this.”
“To say this condition consumes the lives of all involved is an understatement. Your wife is in a way grieving the loss of the child she expected and the life she had hoped for them and your family.”
“While I disagree with her feelings, she needs help more than anything. You have every right to have responded in that way as it is quite a shocking and harsh response.”
“Take this time to seek counseling and sadly be prepared for your wife to possibly walk away from this situation if she determines she can not handle it. It takes a special person.”
“The best I can also advise is to advocate for that little girl as much as you can! Do not let schools or programs give you the short end of the stick!!”
“…I can’t imagine she can get a doctor to agree to this while your daughter is still functioning well. I imagine both parents would need to sign off as well.”
“It is disturbing that she is trying to do this unilaterally.”
“I’m sorry you’re having to deal with this at all. This must be heartbreaking without even having to worry about your wife on top of it.”
You can read the rest of what the internet had to say here.
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