Sunday, December 6, 2009


I know of 5 babies that have been taken too soon from this earth from Mitochondrial DNA depletion..

Our cousin and her husband Amy and nick lost 2 babies.. Bailey in 2004, she was 6 months old.. and Slade in 2005 who was 4 months old.. Amy and Nick are wonderful..Amy is my hero.. she is still such a wonderful mommy to these 2 sweeties, and they must be so proud of her.. I called her the other night just super upset and she did not try to rationalize, she just told me she understood and has been there (in a certain situation) and she did not make me feel like a head case, I love that she is so honest and still maintains complete faith in the Lord. She made a beautiful grave blanket that I am going to lay as soon as the headstone is laid this week..(Pics coming soon)..anyway I just love her and Nick and her mom and her sisters and even her dad.. I am sad that this is something we have in common, but glad it is her.. I am glad that I have someone in real life who gets it. I know I can talk to her and know its in complete confidence any time I need and I hope she knows I am here for her too anytime.. :) (if you guys want to email me pics of the kiddo's I would love to have them to post..)

Second is Lisa.. my friend from up north.. Thanks to the blogger world I have had to opportunity to get to know her and her family.. They have lost 2 girls and have 2 girls still with them! ( all of which are gorgeous!) She and I email back and it is nice to just write and talk to someone.. to hear from her on what is going through her mind..and to be able to unload mine..they often turn into novels, it is so good to have have someone like her..she recently made a video to honor her daughter Rachel, and watching this just sent chills up my spine.. it is so familiar.. everything just rang Ella in my ears.. she doesn't blog here anymore, but she posted this video, go over and watch it, maybe have some tissues handy..

so we have
Rachel 2.5 months old -2003
Bailey 6 months old- 2004
Slade 4months old-2005
Amryn almost 2 months old-2008
Ella almost 9 months old-2009

while I am so thankful for these two, I am so sad of what brings us together.. this disease, this disease that has no treatment, and no cure in sight.. how is there a cure for wrinkles, a treatment for ED?, and not any kind of treatment for this disease? most with this disease die before they are 9 months..Ella almost made it.. 2 days shy of being 9 months..9 months, can you just believe it?? Ella was the "old" one in the group making it to 9 months.. its not right.. we must do something about this..

This is Karina, she turned 2 a little while ago and is quite the little fighter.. she is beautiful!We pray for them every time I talk to God..pray for a miracle for Karina, that she is the one who defies the odds for a very long time! She has a lovely family and is so blessed with a mommy like Melissa, she's the best... go check them out and remember them in your prayers too!!


Bree said...

It is terrible that this disease has taken the lives of so many children. I'm grateful you've found a small circle of people that you can relate to. I have a few friends that I've made through the blogging world, as well. We email, text, and even talk on the phone now. It's amazing that you can spill your guts with someone you've never even met in person. I wonder how women dealt with baby loss before the internet.

Heather said...

I don't understand how we can find something to make your eyelashes grow longer but nothing to help this. I don't get it.

Heidi said...

Jen, Im sorry to hear about all these little angels and your cousins babies. How difficult that must be but so glad you have that support. I just finished watching Rachels memorial video, definately needed tissue. Lisa's strength amazes me, what beautiful girls.

Often I look at our son Jack and wonder how long he will be with us, this disease is so unpredictable. Despite the feeding tube and other ongoing issues, he is stable but also know that can change very quickly. There is progression, as much as I try to remain in denial.

But I do love Lisa's BIL's kindly reminder as she was mourning Amryns soon passing, "focus on life right now" SO thats what we do. Although trying to push away all those thoughts can be very difficult, seeing that so many children dont make it. I owe that to Jack. As he knows nothing about death, only life. Against all odds, I still believe in miracles.

Even though I never knew Ella while she was on this earth, Im detemined to never forget she was here. She was loved. Youre always in my prayers--

Heidi and Jack 6,
Mitochondrial Cytopathy I+III, IV

Holly said...

It isn't right that children should have to suffer and die like this. While I am sorry that they have had to endure this road of loss, I will say it is nice to be able to connect with those who know the road, especially those who have lost children to the same thing.

Christy said...

Even one is too many. :(