It is that time of year again. I try to update my blog at least twice a year about Brody. For those of you who would like to follow closer we have a site set up that will notify you about his conditions every time I update. It is www.caringbridge.org/visit/brodysabin .
Well with the Hope for Little Hearts auction on its way up I thought I would do a little update. For those of you who don't know Brody has Left Ventricular Non Compaction (it is a rare form of Pediatric Cardiomyopathy.) Brody was put on spironolactone to release the fulness in his heart. Many of you who have spent any sort of time with Brody know he has had a unexplainable croupy cough since birth, well the doc saw that his heart is full (we already knew that though.) As far as I understood it fills with more blood then oxygen which creates a fullness in the heart, which in turn maybe causing him to cough to get more of a oxygen flow. His left ventricle also has late filling which is a sign of heart failure. He also has a atrial septal defect, which doctor has said would be silly to repair and put his heart under that stress because it won't "fix" him. Below is a little bit more about the disease and auction.
I just want you all to know why I put so much effort into HOPE for Little Hearts. You all deal with my endless facebook postings and emails promoting the auction. Here is why: We live each moment to the fullest. If there is one thing this situation has taught us (in the words of my good friend, I kind of stole her family motto) "Prepare for the worst and HOPE for the best" HOPE, one of my favorite words. Some of you ask why I put so much effort into HOPE for Little Hearts, that one word is the reason. HOPE for more funding for research, HOPE for a cure, HOPE for all the families around the world, HOPE for one more smile, HOPE for another hug, HOPE for another "I love you", HOPE for another day. That is what each of you give our family. Each letter, each ticket bought for the auction, each volunteer, brings HOPE. If there is one thing I have learned through this trial it has been to look for something positive. With the dismal facts of this disease that was difficult. This auction brings HOPE not only to my family but to the many around the world waiting for a cure. When we feel like our lives are upside down, we always have HOPE to hang onto. We are so grateful for all of you and the HOPE you give us to hang onto.
What does Left Ventricular Non Compaction mean?
It means his Left Ventricle does not compact. It sometimes sticks together instead of pulling back apart and compacting. Which puts him at high risk for cardiac arrest.
Is this Common?
Effects 1 in every 100,000 children (according to www.childrenscardiomyopathy.org)
Is there a cure?
Search for a cure continues. Unlike other congenital heart conditions, there is no surgical treatment or cure that can repair the damaged heart or the stop the progression of the disease.
Can't he just get a heart transplant?
Getting a heart transplant is much more then just simply getting a transplant. In order for a child to get a heart transplant, the doctors have to approve. Heart Transplant Facts- Each year 80% of diagnosed children listed for a heart transplant receive a heart in time. Of the more than 100 children per year that undergo a heart transplant, the average three year survival rate is 77%. Late survival remains to be determined but is expected to improve with further research.
Doesn't the government fund research?
Federal research spending is disproportionate to the severity of the disease. In relation to other serious diseases, research on pediatric cardiomyopathy continues to be extremely under-funded even though the years of potential life lost in a child with heart disease is 2-7 times that of an adult. While the mortality rate for pediatric cardiomyopathy is higher than childhood cancer, and each year the number of children in the U.S. diagnosed with cardiomyopathy is 3 times that of pediatric AIDS, Federal research spending on pediatric cardiomyopathy is only a fraction (less than 3%) of what these other well known diseases receive.
How can I help?
Go to www.hopeforlittlehearts.org and buy your tickets and come to our 4th annual dinner auction March 12th, 2011. Tickets are 2 for $35 and include catered dinner from Branks BBQ. All proceeds from this event benefit The Childrens Cardiomyopathy Foundation
Also we need 5 more volunteers for The One Big Kiss for Childrens Hospital. It is a telethon. We will be answering phones and taking pledges on March 2nd from 6am to 8:30am at Childrens Hospital. All Proceeds from the telethon benefit Seattle Childrens Hospital.
Contact melissa @ melissa@hopeforlittlehearts.org
