DiscussMormonism.com

You are going to search and hope and pray and cry and grasp at straws. Having been in and part of childrens cancer wards and groups you are facing a terrible time.

Find a support group. Won't change things but it will help a lot as you go through it.

Some 'loving God' to let kids get this stuff.

Just an update. My niece's trial run up in Columbus Ohio is about to end. My brother and his family had been hoping the FDA would approve the test enzyme that she has been receiving over the past couple years and their wish came true today:

http://bdsra.org/fda-approves-first-tre ... n-disease/

This means that when they return to Georgia this fall, Layla can receive the same treatment from doctors here. It is really hard to determine how successful this has been. She started the trial run with two other kids with Battens and reactions to the drug vary.

While Layla is still degenerating, it appears to be happening much slower rate than expected. She hasn't spoken since April of 2016, and she requires braces on her legs to walk around (with assistance). Normally someone at her age would have gone blind already but that doesn't appear to be happening yet so the family is hoping that the enzyme is working to at least halt the progression of the disease.

Only time will tell, but we're happy the FDA approved this so she can continue her treatments locally.

Best to you and family on this good news. Please keep us posted.

Same here. Good luck, and steadfast courage.

All the best wishes for her and your family.

When she was just a baby with her cousins...


These were taken just before she moved to Ohio for her treatment:






And this was from July 2015 when I visited her in Ohio:

Kevin thanx for the update.

Beautiful kids.

Blessings to all.

Fantastic! Very happy for you

Excellent news, Kevin. Beautiful kids.

Layla was in the local news: http://www.10tv.com/article/nch-patient ... en-disease