Horrible Family News Yesterday

[_Fence Sitter]

It is times like this where friends and family, whether they are religious or not, are the greatest source of strength and comfort.

Terrible news Kevin. My heart goes out to you and yours.

[_Boanerges]

Sad, and I am sorry for the suffering this little girl and her family will face. I thought of Elder Wirthlin's words: Sunday will come.

[_huckelberry]

Kevin, my hope and prayer that your brothers family, your family, will find the strength and courage to meet this tragedy.

[_Stumpy Pepys]

Kevin, you are one of my favorite voices online. I'm so sorry to hear of this horrible news. Take care friend.

[_Alf O'Mega]

I'm sorry, old friend. I hope that modern medical technology can at least minimize your niece's suffering more effectively now than in generations past.

Discarding faith may free a mind from the difficulty of reconciling pain with the goodness of a creator, but palliation remains the duty of all of us, believers and non-. Empathy enables great joy, but only by shackling us to the inevitability of loss. I can't help feeling that all of what I have enjoyed so far in my life has been purchased on credit, and that the symmetrical suffering due to me stalks inexorably apace.

Remind them forcibly of your love, and hold onto each other. We are all of us headed for the same destination.

[_Kevin Graham]

I appreciate the condolences everyone.

As an update, our worst fears have just been realized.

The gene test just came back from John Hopkins and it is now 100% certain she has Battens. The doctors gave a heart-wrenching consultation to my brother and his wife explaining what to expect, saying Layla will probably go blind within the next six months before the rest of her bodily functions begin to give out. They urged them to focus on her quality of life and spend as much time with her as they can.

A friend started this website for her "Layla's Light of Hope."

This has been so difficult for us all...

Incidentally, our situation reminded me of a movie called Extraordinary Measures with Brendan Fraser and Harrison Ford. It is based on a true story and is about a businessman whose two children suffered a genetic disorder called Pompe. Both of them were not expected to live through the next year and he tracked down a scientist at the University of Nebraska whose work was considered groundbreaking by others, and light years ahead of anyone else's work on a cure. Anyway, great movie because it had a happy ending. The kids were not completely cured but he did manage to save their lives.

[_DrW]

It is hard to imagine anything worse for a parent, or close relative, than facing the imminent loss of a young child to an incurable disease. The fact that the progression of the disease will involved pain and suffering for the patient doesn't help.

Feelings of helplessness and despair should not blur the focus on the child and her well-being under the circumstances.

The doctors will surely recommend palliative care and medication as appropriate. Hopefully the parents will have no qualms about the use of narcotics, if needed, when the time comes.

Focus has to be on making the young patient feel as comfortable and secure as possible.

The advice of the doctors - that is to spend as much quality time as possible with your niece - is probably the best that can be given.

My thoughts are with you and your family on this, especially your niece.

[_Elphaba]

I can think of only a very few things more devastating than what your family is now going to suffer. How horrible for all of you.

Is it possible they will come to be glad they knew so that they will be able to make the most out of every remaining moment?

My heart breaks for all of you, but particularly for Layla and her mum and dad. Truly.

Elphaba

[_Kishkumen]

Nothing breaks my heart like the unjust suffering and early passing of a child. This is devastating news for your loved ones. I am so sorry, Kevin.

[_Kevin Graham]

A tribute to my Niece Layla....

https://youtu.be/QMu7FlQ5WR8