My daughter lived 780 days (2 years and 2 months) and we often wondered after she died, if she knew Jesus. She Did! We know we will see her again and I hope her story will be a comfort to others who have experienced loss. May God comfort you and bless you!
Emily was born on February 13, 2002 with Carnitine-acylcarnitine translocase (CACT) deficiency which is a genetic disorder that prevents the proper breakdown of fats. This leads to excess ammonia in the blood (hyperammonemia), an enlarged liver (hepatomegaly), and a weakened heart muscle (cardiomyopathy). Emily died on April 3, 2004 of cardiomyopathy.
Carolyn and Terence miss Emily very much. We know that she lights up heaven just a little more with her presence but this world is that much dimmer without her.
God Bless!
A Father’s Testimony by Westchester Men’s Ministry is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
Based on a work at https://nymensministry.com/2012/11/08/a-fathers-testimony/.
Westchester Men's Ministry 
My heart breaks for your daughter.How courageous of you to share her story, I am a mother of 3 kids, it would break me totally if I lost one of them! Your courage is very inspiring, your daughter is 100% in Heaven! God bless her and you!
Thank you Tazein. I appreciate it. I’m glad you watched and liked the video!
I watched your video. I have a grandaughter with CACT. She will be 3 years old next month. I know that sometimes we feel very alone with this condition because it is so rare. Mollyjane gives us such joy. Thank you for allowing others to hear your words
MaryJane, thank you very much for your comment. My wife and I will keep you and MollyJane in our prayers. Please let us know if you would like to talk over the phone. We would be happy to provide encouragement and any other help we can.
God bless!
Would love to talk on the phone but we live in NSW Australia. Thank you for your prayers.
My son, Gage, was born on 7/10/2008 and also has CACT. I’m always searching online for other families and that’s how I came across this website. I’m deeply sorry for the loss of your beautiful daughter.
Amy Sloss
Thank you Amy. We were so blessed to have her and we know we are going to see her again. Emily had an extreme case of CACT and had almost no detectable amount of the enzyme.
I hope Gage is doing well.
Gage also has a severe case of CACT. We have come close to losing him numerous times. Here is a link to a posting I did for him for Rare Disease Day-
https://flic.kr/p/r3trHQ (copy & paste and it should work)
Amy
So sorry for your loss!! God bless!! I am on this site because we just had a son his name is Duke on 11/09/2015 that just was diagnosed with Carnitine-acylcarnitine translocase deficiency (CACT) we are still in the NICU was diagnosed 04/17/2016. We are with him everyday praying. We love him so much!! Please would like some advice or encouraging thoughts on this diagnosis God Bless everyone and again sorry for your loss!!
Hi. My son, Gage, has CACT as well. Feel free to contact me at amygamble574@gmail.com. I’m in contact with a handful of parents worldwide that have children with this disorder. There aren’t many of us, we are a small group but love to help each other. I hope to hear from you.
Amy
Kristian, first of all, my wife and I would be happy to talk to you. I also share that offer with you Amy and MaryJane.
Kristian, the fact that Duke went 6 months without being diagnosed indicated that he doesn’t have as severe a case of CACT as Emily had. That’s good news.
I have two questions: what are they saying in the hospital, that is what is his condition at the moment? Also, where are you located and what hospital is he at? Sorry that is more than two questions.
I ask because I would highly recommend Dr. Wendy Chung at Columbia Presbyterian in NYC but there are other doctors in Texas, Canada and elsewhere that have experience as well.
Please feel free to contact me at NYMensMinistry [at] yahoo [dot] com. I put my e-mail address this way so that spammers can’t read it easily with their bots. Of course their are no spaces and the [at] should be @ and the [dot] should be a period.
Hope to talk soon. We will keep Duke in our prayers!
Terence and Carolyn
I’m not sure if my previous comment went through, so sorry if this is a duplicate. My son, Gage, also has CACT. I’m in contact with a handful of parents worldwide that have children with CACT. There’s only a few of us and we are very supportive of each other. Please contact me at amygamble574@gmail.com.