Posted on 04/12/2009 by athriftymom
Please note that this post has nothing to do with a Thrifty deal, or coupons. But something much more important and personal to me. Those of you who know me personally know that my oldest son Matthew who is now seven was born with Hypoplastic Left Heart Syndrome (HLHS) or in other words he is missing the whole left side of his heart. You ask me how he is alive? We have been blessed to be one of the lucky ones…..with all odds stacked against us, and 14 surgery’s later Matthew is a happy 7 year old boy. We have our daily challenges, but face them with faith and a smile on our face.
One of my readers asked me about vacation ideas, I emailed her back saying I would look into it. I told her we don’t leave town much due to my sons heart. Through emails, I learned that her son Jacob is also in heart failure and sees the same cardiologist as Matthew. She is part of a support group for Heart Family’s. It is new to the Boise area, but has been needed for a long time. My son Matthew had to be flown to Seattle and Phoenix for most of his medical care. They have a large support groups. I was alone, scared, and had the world on my shoulders. It was the kindness of other heart moms that helped me make it. I did a post here
, explaining how doing this blog and helping struggling family’s is my way of trying to give back and say thank you to them.
I am thrilled to pass along the great news that Idaho now officially has a pediatric heart support group.
Courageous Hearts of Idaho
Courageous Hearts of Idaho is a support group for families affected by pediatric heart disease.
CHI was founded in 2008 by parents who recognized the need in our community for face to face support and sharing of resources and information. Courageous Hearts of Idaho is the only pediatric heart disease support group in Idaho.
A message from Jacob’s Momma:
Did you know that 9 out of every 1,000 babies born have some form of congenital heart defect or heart disease? My son Jacob is one of them. He was born with a condition called Dilated Cardiomyopathy, which caused him to be in congestive heart failure. It caused his heart to become weakened and enlarged, and now it cannot pump blood efficiently. Jacob is now on over 10 medications a day and even though he tries his hardest to be a typical 3 year old boy, he isn’t thriving. He tires fast and just can’t keep up with the other kids. Even with all the wonderful scientific advancements that have helped him live this long, he still is reliant on a feeding tube and is still in heart failure. I hope that someday we will find a cure for heart disease, so that Jacob and all the kids like him can grow up and lead happy and healthy lives!
Sincerely, Jinjue Serre
Up Coming Special events
Participation in American Heart Association’s START Treasure Valley Heart Walk (this is actually coming up in May!!)
Courageous Hearts of Idaho family picnic to be held annually
Julie Du Bois
RN St Lukes RMC
Pediatric Cardiovascular Services Coordinator 208-381-1978 email firstname.lastname@example.org
Andrew and Jinjue Serre
De and Melanie Enrico
Who: Moms, Dads, extended family, caregivers, nurses…Anyone that loves some with a Courageous Heart!
When: The 3rd Tuesday of every month at 6:30 PM
Where: St Lukes RMC, downtown Boise. South Tower, Andersen Center 5th floor
How: Just show up! The group is a positive, informal and comfortable place to meet others with similar experiences and share information
Filed under: I'm a Heart Mom |