BIG HEART 30 - ProfilesArchive

About Me

My husband and I
I believe in the spirit world,I believe that we all have a journey here on this earth and we all choose that journey long before we even get here. Sometimes we do not know why things happen but in the end we realize that "oh this is why i took this path and this is why this happened or why I had to go through this". Life is about choices and it's up to you to make the good ones vs. the bad ones. I also believe in God. I am not a bible thumper but I do go to church or try to every Sunday with my son, Liam whom is my little man. I am a very calm and yet outgoing person that enjoys being with my family and friends. I am a true friend and honest person. I live my life knowing that each day I am here on this Earth is one day closer to the other side where there is no pain, no fear, no wrong. Someday I will be there again and reunite with all of my lost loved ones who have passed on. I am married and have two wonderful little boys. They are my angels and they are the reason I keep going everyday. Without them I do not know where I would be. My family and I live in northern CA. we love it out here.

My Interests

I'd like to meet:

Anyone else that has Danon's diseaase or thinks they have it. This is an extremely rare disease and we are just now starting to find more and more families with it. I think to date (June 2008) I know of 5 other families besides ours that have this disease. Please contact us if you have it we are looking for others out there.
Our boys are the most precious things in our lives. This disease has been in our family for years and yet we just found out the specific name in 2005. All we can do is pray that our boys get a heart transplant and that the research doctors come up with some sort of treatment. As of right now, there is no cure for this disease and without heart transplant, most danon disease patients die around age 30.Although my brother (the oldest known with Danon's Disease is still living.
Our boys both have a very serious heart condition and both will need heart transplants when they hit a certain age probably around age 17-24. We just found out that our youngest Mason has something called PDA. This is a form of CHD. So many children' have CHD 1 in every 125 babies born each day in the US. It is a very common but serious heart defect that will require surgery within the next few years of Mason's life. Please pray for him and my other son. We need prayers and two miracles.
THE TATTOO ON MY BACK:

imikimi - Customize Your World
Mason James 6lbs 4oz. 19inches long

Liam Lynn 7lbs 8oz...20inches long

My Blog

Just venting

I just need to vent here before I go off. Why is it that no one says THANK YOU anymore. When someone holds the door for you and waits till you make it do you not say THANK YOU? When you se...
Posted by on Mon, 05 Jan 2009 08:58:00 GMT

The thought of life without my mom

I received a phone call last night from my little sister, "mom is back in the hospital and it is bad this time, her heart went to 220bpm". I went into panic mode and wandered aimlessly around my house...
Posted by on Sat, 25 Oct 2008 20:36:00 GMT

HATRED such a big word....not enough happy people out there....

So I say HATRED is a big word because i have realized that so many people have hatred and can’t learn to let go of the past. I wish more people would just be happy and let things...
Posted by on Mon, 24 Mar 2008 15:03:00 GMT

My brother, A danons patient....

I write with a sad face today, I talked to my mom and my brother who is 33yrs old and lives in Coloado seems to be going downhill more and more. He was diagnosed with Danon’s disease when he was...
Posted by on Thu, 13 Mar 2008 08:30:00 GMT

Thanking God for another day w/my family....

I enjoyed my day today so much with the family, we rested and relaxed this morning till about oh 1:30 still in our pjs haha! All 4 of us! =) Then we got dressed and went to the local park and played k...
Posted by on Sun, 09 Mar 2008 18:18:00 GMT

Were home...YAY!!!

Well we made it home safe and sound. Liam did AWESOME! We are so proud of him and how he handled everything, he was such a big boy and did everything they asked of him. I posted a bunch of pictures fo...
Posted by on Fri, 07 Mar 2008 18:51:00 GMT

About to leave...

Well we are almost ready to leave. It's about an hour and a half drive for us to Stanford. Liam, Chris and I are wearing our matching Donor Awareness shirts. Chris took a picture of Liam and I this mo...
Posted by on Fri, 07 Mar 2008 08:43:00 GMT

What is Danons from a doctors definition....

Danon disease is a rare genetic disorder characterized by an X-linked dominant inheritance pattern, as a result of which males are more severely affected than females. Among boys, the key features are...
Posted by on Tue, 26 Feb 2008 22:15:00 GMT

A video of my boys...

These are my precious angels! I love them more than life itself. Where would I be without them!
Posted by on Fri, 22 Feb 2008 19:07:00 GMT

The little things.....

The little things in life are sometimes what get me through a day with my two boys.....When you have children that have heart conditions, it's hard to think positive when the...
Posted by on Fri, 22 Feb 2008 17:12:00 GMT