Courageous Parents Network channel features videos of parents of children with serious, life-threatening illness sharing their experiences across a wide range of psychosocial and emotional issues. It is not disease specific but is for anyone who is seeking community and a desire to hear from other parents to know that they can do this. Issues explored include: coping with the diagnosis, spirituality, marriage, caring for the other healthy children/siblings, working with the medical team, self-care, control, decision-making and palliative care, questions about end-of-life, transitioning to end-of-life, bereavement, parental identity, and meaning making. Videos also include a pediatric psychologist and grief counselor who frames the issues, a palliative care doctor, a palliative care nurse, and a chaplain.
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I disagree. I feel that the more I know, the better equipped I am to help and to understand. I've done this all my life, with a few family tragedies. My husband was diagnosed with cardiomyopathy at 50. I read everything I could find about the progression. I was, at least somewhat, prepared. I think this doctor is under estimating what people are capable of. I realize that my husband wasn't my child but who can truly know how each individual experience feels. I also went through the same fear when both my twin sons were diagnosed with lymphoma. Blessedly, both are considered "cured". But here again, knowledge is empowering.
My unborn was just diagnosed with this two days ago..
❤
I lost my 24 year old son 27 years ago to Leukemia. I eventually became a Hospice nurse because of that. The death of a child is always a sad and devastating thing no matter the age, because you never expect that your child will die before you do. For me it was a mixed blessing because my son was very ill and suffered greatly for 2 years before he passed . He told me that he wanted to die, so when it happened it was almost a relief ,because he was no longer suffering.
I'm so sorry. Our 19 year old son had leukemia. It's not easy seeing your child suffer. I'm sorry for your loss.
@@AS-yz2izThank you so much. You have my condolences as well.
I'm so sorry 😢😢 I'm a patient.. but i think about my kids
You should have had an abortion.
You should have never gotten pregnant or had an abortion.
yes Amen. Jesus has given these little kids their gardian angels to protect them in their younger days, especially during a very difficult time.
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You felt his soul leave and go be with the Lord.
This is what happens when parents don't get tested. We jews are tested automatically for this since it predominantly hits us but it can hit anyone
Here's a question if you're Jewish and you're husband is Jewish why did u have kids when u knew u were carriers and put your kid through this? Don't say u didn't know..I'm Jewish I know you knew especially if you're ashkenazi u were automatically tested..we all are. rabbis won't marry us without it
Amazing parents
Thank you for sharing your story. 🌲🙏🏻❤️✨🙏🏻❤️
Can someone please get with me and help me save my granddaughter with Trisomy18???
Next time get tested to see if you're carriers. Gentiles normally don't though herein lies the problem
This is tay sachs. And if you are Jewish particularly ashkenazi decent u r supposed to be automatically tested and if not u should know to be tested since we are the ones that usually get this. However if you aren't Jewish u should be tested anyway and if u don't u can't complain about this happening even though it's very rare
kzread.info/dash/bejne/fZmJs9qyqbe5oJM.html for help with GM1
It's something about a child suffering that i can't emotionally handle. Im totally emotionless with 98 percent of other situations regarding death but when a child dies, it hits me like a ton of bricks
Given that most of us would submit ourselves to eternal torture for our kids if required, I think facing the loss of a child would feel worse than eternal torture
I hope these souls are doing well today.
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GOD BLESS YOU....
Can u contact me 7542187369 my kids have the same disease I DNT Know wat to do
Bone marrow transplant.
They will die in this point+ the Bone marrow transplant is for who the symptoms didn’t show yet because it just stop the leukodystrophy from effecting on the child...
I’ve never experienced Tay Sachs in any contact, but I wanted this mother and family to know that these videos have completely opened and touched my heart to this disease. Thank you.
Thank you Chloe, for taking the time to send us this message. We will let Kate know.
Good job! Keep it up!