In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.
We have been in contact with an adult HLHS survivor. Her name is Maribeth Gillis. She literally wrote me back 8 minutes after I wrote her an email. She shared with me a blog posting that she wrote as an adult CHD survivor telling her story. She will be a regular blogger on Heart Waves. Here is the link:
http://info.heartwaves.org/bid/119923/Living-As-An-Adult-With-HLHS
Saturday, February 11, 2012
Friday, February 10, 2012
CHD Week Story #4 - Bowen Hammit
In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.
Today's story is that of Bowen Hammit. His dad, Matt Hammit, is in the Christian band Sanctus Real and one of my sisters was the first one to point me in their direction. Matt actually wrote an ablum inspired by his son. We just got the album and it really keeps you in tears. Bowen will be 1.5 here shortly and by the family's account, he is doing well. Here is the story of Bowen's birth and first surgery at U of M. Note: you have to clink on the link to watch it on Youtube.
Today's story is that of Bowen Hammit. His dad, Matt Hammit, is in the Christian band Sanctus Real and one of my sisters was the first one to point me in their direction. Matt actually wrote an ablum inspired by his son. We just got the album and it really keeps you in tears. Bowen will be 1.5 here shortly and by the family's account, he is doing well. Here is the story of Bowen's birth and first surgery at U of M. Note: you have to clink on the link to watch it on Youtube.
Thursday, February 9, 2012
CHD Week Story #3 - Logan Vallee
In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.
This is the story of Logan Vallee who is 11 years old and has HLHS. Like most with HLHS, his road has been a tough one. But we are thankful that even in the last 11 years how much the medical field has advanced.
This is the story of Logan Vallee who is 11 years old and has HLHS. Like most with HLHS, his road has been a tough one. But we are thankful that even in the last 11 years how much the medical field has advanced.
Wednesday, February 8, 2012
CHD Week Story #2 - Aly Jean
In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.
If you who have read our blog regularly or talked to us about HLHS, then you are likely to remember this heart warrior, Aly Jean. Her mom, Jenny, was one of the first people we reached out to when we received the diagonis. Jenny has answered tons of questions for us, ranging from serious to silly. Considering all the kindness, patience and support she has shown to our family as total strangers, I know that she is an amazing mom, wife, daughter, sister, friend, colleague and person! Aly is through the planned surgeries, doing well and will be turning 3 in June. Below is her 2nd Birthday video from last June and it just melts your heart. Check out their blog to see more recent pictures here. What a special little girl and family!
If you who have read our blog regularly or talked to us about HLHS, then you are likely to remember this heart warrior, Aly Jean. Her mom, Jenny, was one of the first people we reached out to when we received the diagonis. Jenny has answered tons of questions for us, ranging from serious to silly. Considering all the kindness, patience and support she has shown to our family as total strangers, I know that she is an amazing mom, wife, daughter, sister, friend, colleague and person! Aly is through the planned surgeries, doing well and will be turning 3 in June. Below is her 2nd Birthday video from last June and it just melts your heart. Check out their blog to see more recent pictures here. What a special little girl and family!
Tuesday, February 7, 2012
CHD Week Story #1 - Jeni Busta
In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.
Jeni Busta is a 26 year old survivor of HLHS. She drove across the country to meet a new baby born with HLHS, Kaelyn DeYoung, in April of 2011 and is making a documentary of the trip. The trailer for the documentary is below and we are just ordering the DVD for the full documentary as it just came out! We are thankful that her parents made the choice of life and that Jeni has been such a strong heart warrior. She really has been though a lot. Over the last 27 years the medical procedures have changed and improved so much that it gives us such hope for our little girl!
"Journey's Beginning" Trailer from james eric on Vimeo.
Jeni Busta is a 26 year old survivor of HLHS. She drove across the country to meet a new baby born with HLHS, Kaelyn DeYoung, in April of 2011 and is making a documentary of the trip. The trailer for the documentary is below and we are just ordering the DVD for the full documentary as it just came out! We are thankful that her parents made the choice of life and that Jeni has been such a strong heart warrior. She really has been though a lot. Over the last 27 years the medical procedures have changed and improved so much that it gives us such hope for our little girl!
"Journey's Beginning" Trailer from james eric on Vimeo.
Monday, February 6, 2012
Congenital Heart Defect Awareness Week
Februray 7-14 is Congenital Heart Defect Awareness Week so we wanted to pass along some information to help spread the word. Unfortunately, congenital heart defects (CHDs) are all too common and can happen to anyone at any time. We are proof of this as there is no reason that anyone can give us why our daughter will be born with a CHD and we didn’t do anything that anyone can point to that caused our daughter’s CHD. HLHS is just one type of CHDs and it is amoung the most rare. More research is really needed to help those that are born with CHDs and to help eradicate CHDs altogether!
According to the CDC:
-Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1 out of 100―or about 40,000―births per year.
-About 85% of congenital heart defects are NOT associated with genetic conditions.
-About 70% to 80% of people with a congenital heart defect do not have other physical problems or developmental or cognitive disorders.
-There are likely nearly 1 million adults in the United States living with a congenital heart defect.
These heart warriors have usually been through more in the first few years of their lives than we can even imagine! This week we will share with you some stories of these heart warriors with HLHS to give us all some hope!
Saturday, February 4, 2012
Hearts of Hope Event
This afternoon we attended a Hearts of Hope event called a Day for Hearts. It was a nice event for those affected by congenital heart disease. The event had games, lunch, the best balloon making clown ever, a magic show and dancing. Our older daughter really enjoyed the dancing at end and thus, why she will still not going down for her nap! Anyway, it was inspiring to see so many little survivors running around enjoying themselves. Besides at the hospital, this is the first time, to our knowledge, that we have seen any HLHS kids in person. This was truly an inspiring and emotional experience. It is so encouraging to see these children running around like any other child. It really does give us hope!
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