Jerika Bolen scheduling her ventilator removal date

[princesa]

https://www.washingtonpost.com/news/...her-own-death/

Has anyone heard of this recent news of this 14 year old scheduling when she'll remove her tube as she has muscular atrophy and is in constant pain. If you have time please read the article, I would be interested in how fellow Christians view this. If Catholicity sees this I'd be interested in her response as well. This is really hurts the heart. Thank you.

[KingsGambit]

Cath says she'll get back to you on this later tonight (since I'm on the computer right now).

[Teallaura]

[princesa]

Thank you KG, I appreciate it.

[Catholicity]

https://www.washingtonpost.com/news/...her-own-death/

Has anyone heard of this recent news of this 14 year old scheduling when she'll remove her tube as she has muscular atrophy and is in constant pain. If you have time please read the article, I would be interested in how fellow Christians view this. If Catholicity sees this I'd be interested in her response as well. This is really hurts the heart. Thank you.

Realistically this is far from assisted suicide but falls into the line of of no longer taking "extraordinary measures" to prolong suffering. In hospice and terminally ill patients its actually seen Identical to a Do Not Rescucitate Order. At this point, comfort and pain medicines would be given to keep the patient out of pain as well as specific medicines to assist the patient from a high fluid build up that keeps the breathing more relaxed. Essentially its a combination of sedatives and keeping the mucous glands moisturized. It wold be the same as if someone with end of life cancer or lou gherig's declined antibiotics, ventilation, or a feeding tube in order to prevent the length of suffering that would be triggered by living longer. I don't see a problem given that the parent's consent to the 14 year old's wishes. This type of Muscular Dystrophy is excruciatingly painful, terminal and with 38 surgeries, no cure and unable to feed oneself the decision to end the measures which actually keep a person in extreme pain are ok Especially if they are in hospice already. The USCCB agrees that no extraordinry measures need be taken if end of life is emminent

[princesa]

Thanks for the response; I am somewhat familiar with the Vatican stance. I didn’t know much about the disease. I tear up when I remember the article with her smile with her little dog by the window. I just thought there has to be some way for her to live. Some people who suffer from SMA have blogs, I read through one in particular about a woman in her twenties with type 1 which is the most severe. I spent time reading through this one in particular and others. She chronicles her life and friends much like Jerika she was living to the fullest, still is. She talked about her trouble breathing and how excited she was for a hope for a new drug they are waiting for the FDA to approve.
https://alyssaksilva.com/page/2/

According to research, Type 2 is not a terminal illness, with no indicator of life expectancy since many live up until adulthood such as the blogger and another woman who is 44. Her underlying condition will cause death once the ventilator she uses for 12 hours a day is removed. I understand the ventilator is extraordinary means unlike the basic care, I just can’t help but wish/wonder what if this new drug worked to alleviate her and she wouldn’t have to be on the ventilator, she could have hope like this other young woman. Or use the ventilator at night and live through the day like the people in the ventilator community do. (below)

I’m just venting, I just can’t get her out of my head. Many people live on ventilators, there is a website dedicated to such http://www.makoa.org/vent/ventlife.htm with people stating… “… they shouldn't say that our lives are not worth living or are not worth paying for. It's not OK to say that we have no quality of life. That's just the biggest hoax.…….And he's equally passionate in his advice to someone who needs ventilation. "To a person with MS or MD or ALS who is getting weaker, I would say, get a vent. Life's worth living. Don't die just because you can't breathe on your own. You can have many fun, productive years after you go on the vent."It's not a hard choice. It's only hard because of people's fear of becoming a burden. I think that's the No. 1 fear of people going on a vent. It's tough, man. But make the choice for it. Don't be afraid of ventilators."

Another woman with the same disease as Jerika, she is a well known researcher and writer on disability issues. Can this be Jerika years from now? It just breaks my heart. What about the community rallying around her with inspiring stories like the blogger or the well known researcher? What if she were surrounded by people who showed her there are others living with a ventilator who are grateful it helps them LIVE. Maybe there are doing that but she has her mind set, I don’t know but I know that family and community and friends can make a big difference in allowing her heart the hope these other people have. Why do they, with the same illness, have hope and not her. It’s just depressing she is such a beautiful little girl.

Margaret Nosek, 44, with Spinal muscular atrophy is a faculty member at the Baylor College of Medicine and a well-known researcher and writer on disability issues. A woman in motion, she thought hard before accepting a ventilator.
"There was a lot of negative self-image stuff," she concedes. "I told myself, `I'm falling apart, I'm not worth anything.' And there's this unwillingness to adopt yet another piece of equipment in your life." But six years ago, she started using BiPAP ventilation at night.
"Once I did, I felt so much better. It's night and day. It's like being dead versus being living.
"Why live your life in a fog with a constant headache and always having nightmares and being nervous and jumpy when you don't have to? It's like taking aspirin for a headache -- if it's there, why not use it?"
Her advice to nasal mask users is to get a custom-fitted mask. "There's no way to get a good seal on a standard industrial mask -- I tried one at first, and it was horrible. But they have these custom-made masks, and I really don't understand why they're not used more often. It solved the problem completely. Why aren't they more popular?"
She does see a tracheostomy in her future. "I think it's inevitable. I don't think nearly as negatively about it as most people do. I have lots of friends who use some sort of noninvasive ventilation, and some are so insistent that they would rather wither and die than be trached. I would rather live. And I would rather live well. I know people who are living very successful and happy lives on trachs.
"We live with this negative stereotype about ventilators -- there's this image of people with multiple system failure at the end of their lives. That is absolutely not the way to look at it for someone with a chronic disability. It's a piece of technology that can help us live better."

How I wish Jerika could get a visit from this woman! Or Stephen Hawking.
I will pray for this beautiful little girl.