Chip Chick
“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.”
