Horrible Family News Yesterday

[_Servant]

This is a tragedy. It appears to be a genetic disorder in most cases, and both parents must carry the recessive gene. Is your brother within Mormonism? There have been cases of genetic problems within Mormonism due to the intermarriage of Mormons within a fairly confined geographical area. Here is an article:
The Genetic Catastrophe That Has Sprung from Polygamy by Steve Benson: http://exmormon.org/d6/drupal/The-Genet ... m-Polygamy

This is perhaps not the time or place for any discussion, however scientific or well based in evidence (and I'm not sure how Steve Benson measures up in that regard), that might be thought to imply that this child's affliction is the result of any action of its forebears. The family already has enough to put up with without going into that. I'll delete this post if you delete yours.

If there is a genetic problem in the family, people within the family need to be aware of it. And the way family's come to know about these issues is exactly because some unfortunate victim turns up with the medical problem. It's the same with other groups which marry within their own subgroup - look at the Amish for instance. It's something that is unpleasant to think about, but true nevertheless.

[_Chap]

If there is a genetic problem in the family, people within the family need to be aware of it.

I think they don't need to learn it from you, somehow. Consider the possibility that you may be taking too much on yourself, and crossing boundaries that are better respected.

[_grindael]

Kevin,

All my best wishes to you and your family. My sister died very suddenly in 2013 from a brain tumor. It was horrible. I sympathize.

[_kairos]

Kevin

This breaks everyone's heart and raises questions of life and death for us all. May God's Spirit be with this little one who must suffer but if God wills can be healed somehow.

My hands are lifted in prayer for your entire family!

k

[_Kevin Graham]

Thanks everyone.

Servant, my brother is not LDS and neither is his wife.

You're right about the cause of Battens (both parents must share some kind of genetically deficient trait), but it has nothing to do with Mormonism.

We're holding out hope that these injections will at some point prove to be worth it. My brother was against it initially because he didn't want his daughter to go through her final years suffering through and recovering from major surgeries. But when it is really the only chance science has thus far provided, what is a Father to do?

[_Jersey Girl]

Thanks everyone.

Servant, my brother is not LDS and neither is his wife.

You're right about the cause of Battens (both parents must share some kind of genetically deficient trait), but it has nothing to do with Mormonism.

We're holding out hope that these injections will at some point prove to be worth it. My brother was against it initially because he didn't want his daughter to go through her final years suffering through and recovering from major surgeries. But when it is really the only chance science has thus far provided, what is a Father to do?

Sometimes he makes a leap of faith in the medical community, when that is what's left to him to save his girl because he has to know he did everything that he possibly could.

Kevin, I'm so sorry for what your family is going through. One thing that comes across in your posts is your sense of family and the love you have for the children in your life.

She is beautiful, Kevin. Thank you for sharing her story with us.

[_Some Schmo]

We're holding out hope that these injections will at some point prove to be worth it. My brother was against it initially because he didn't want his daughter to go through her final years suffering through and recovering from major surgeries. But when it is really the only chance science has thus far provided, what is a Father to do?

Brutal choice.

[_msnobody]

I no longer consider myself a religious person, but given the situation I couldn't help but wonder what value religion could have in times like these.

That is certainly devastating news. So sorry your family is going through this. It is hard to say what you'd do or think until you actually go through such as situation yourself.

I got a chronic myeloid leukemia diagnosis, a form of blood cancer, back in 2013 and to be honest, it made me re-think absolutely *everything.* Because I trust in the Lord Jesus Christ, I very soon came to realize that my life is in His blood and not my own blood. So, whatever the end result is, I just want Him to be glorified. So, I am at peace with whatever trajectory it takes. It is okay, because I trust Him with my life-- He IS my life. Really, I have been so blessed through it. Patients I encounter with my work have ministered so much to me and most of them have a much more serious form of cancer than I do. So, you ask, "What value religion could have in times like these?" With me, it is peace, regardless of the outcome. The hymn, It is Well With My Soul, by Haratio Spafford comes to mind https://www.youtube.com/watch?v=0nJ6wQpLmuo

Again, I'm so sorry you/your family is going through this.

[_Aoife]

Thanks everyone. I'm sorry if I gave the impression that she had passed, but she is actually still fighting this thing. She is receiving a special treatment up in Columbus Ohio at Nationwide Hospital, along with three other Battens children. Some pharmaceutical corporation is experimenting with a new treatment and she was chosen out of more than a few dozen kids across the country to partake in the experiment. It involves injecting enzymes into her brain every couple of weeks, which is taxing in and of itself on her poor little body. It was supposed to be a 14 month long process based on results but they've extended the treatment further. Since the treatment she had been rushed to the ER because of high fevers and last month they had to insert a feeding tube into her stomach because she stopped eating.

It is really difficult at this point to tell whether or not the treatment is working at all. She is still degenerating, she is unable to speak full sentences, and she shakes a lot as if she has Parkinson's disease. But there is a sliver of hope, as the other children in the project appear to be improving some.

No one has ever survived this horrible disease, but we're still hoping the treatment's results take a dramatic turn.

I'm so sorry your niece & family are going through this <3

I have several friends who are nurses at Nationwide Children's (one is an exmo I grew up with), and my little niece had both her heart surgeries and chemo treatments there. My brother and his wife basically lived there during their daughter's early years, and we've spent quite a bit of time there too just visiting with them. I'm sure your brother and his wife already realize this, but they'd be hard-pressed to find better pediatric care. That hospital is full of such committed, professional, compassionate staff. :)

[_Ceeboo]

Kevin, I'm so sorry for what your family is going through. One thing that comes across in your posts is your sense of family and the love you have for the children in your life.

Kevin, after I read this thread - I wanted to post something to you that was respectful - while staying in my lane. I found what I wanted to say to you in Jersey Girl's post above.

Peace,
Ceeboo