Thursday, July 15, 2010

Excited for CHD Awareness!


So first I would like to remind everyone to tune into Boston Med tonight on ABC at 10PM.

My cousin's daughter Sara will be featured on tonight's episode. She had hypertrophic Cardiomyopothy and had a heart transplant on March 21, 2009. Sara's brother Ian has the same condition and may also have to have a heart transplant. Please keep them in your prayers.

They thought that the CHD came from their dad's side since he had the same condition however now that Jake has a CHD I wonder if it is on our side as well. My cousin on my mother's side also has 2 children with CHDs. So including Jacob that is 5 kids all Jake's generation who have a CHD on our side. I never knew that much about CHDs or that I was at risk to have a child with one. Can't be a coincidence. Either way we are blessed to have each and every one of these precious children.

Please watch Sara's episode. I am so excited that Boston Med has had 2 out of their 8 episodes dedicated to Congeital Heart Defects. How great for awareness!

Sara's Story on Good Morning America

Article Sara wrote about her experience:

Sara's Episode Highlights

Great Job Sara!

American Heart Association

I had the pleasure today of telling Jacob's story to the board members of the American Heart Association. I was honored that they let me show them our experience and why it is so important to continue to raise funds for these children. I tried to give them a window into our world so they could see how many people are affected and how important this is. 1 in 100 babies have a congenital heart defect. It is the number one birth defect and number 1 cause of death due to a birth defect. Twice as many babies die from CHDs than ALL of the pediatric cancers combined yet pediatric cancer gets 5 times the funding. So many babies don't even live to see their first birthday. This has to change. 30 years ago Jacob's condition was 100% fatal, now they have a 93% survival rate. That is huge. Who knows what they could do in another 20 years. I am so excited to be able to be a voice for these amazing kiddo's.

I also showed them the picture of Kenny. He is a 21 year old HLHS survivor. He came to meet Jake while we were in Philadelphia. He has been such an inspiration for our family. Kenny is doing great. He had a pacemaker put in 5 years ago, other than that he has lived a great life so far and I pray will continue to for many many years to come. Kenny is proof that there is HOPE.

My hope is that I can help educate people so that they can learn about our kids and be able to better educate patients. I never want another mother to feel the devestation that I felt. We were not given much hope and if I had not done my own research I shudder to think of what could have happened. Jacob is a blessing and I thank God everyday for guiding me to make the choices I did. I can't imagine never knowing his smile.

Start! Heart Walk.

I am trying to put a team together to participate in the American Heart Association Start! Heart Walk. The walk will take place in Charleston, WV on Saturday September 18th beginning at 8am. Now this is all dependent on how Jake does with his Glenn. His surgery is on August 4th. If he recovers well and the doctor's give us the ok then I would love to push him in his stroller for the walk. I still want to take precautions so Jake won't be able to be held by anyone or have anyone come to close but it would be great if he could represent CHD kids.

I need 15 people to be able to register our team. You basically would try to get sponsors to donate and you would agree to walk on that day. I at least want to try to get sponsors and raise money for this cause. I hope to walk but again it depends on how soon we can come home and also on the weather and Jake's doctors approval.

If you are interested in Joining Team Jacob please email me at If I can get 15 people I will contact the coordinator and set it up. I can email the details to you when I get them so make sure I have a way to contact you.

Oh and one more thing.... You have to be willing to wear a Team Jacob t-shirt lol.

Prayer Requests:

• Jake's heart buddie Jack is going for his Glenn tomorrow morning.
Please pray everything goes well and please pray for calm and strength for his parents.

• Please continue to pray for Ruthie as her body adjusts to her new heart.

• Pray for Reece who continues to recover from his Norwood.

• Pray for Bodie who may get to go home soon but has to wait a little longer for his Glenn.

• Pray for baby Emma who is still waiting on her new heart and is back on life support.

• Please pray for Jacob as we will be leaving in a week and a half for his second
open heart surgery. Pray for his doctors and his strength to fight this next step
in his Journey.

Thank you so much for the constant support and prayers for our family and all of the other families who are fighting this battle.

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