As you know CHD (congenital heart disease/defect) is near and dear to my heart since my youngest daughter has one and has underwent major life saving open heart surgery. I have never heard of CHD before we found out about my daughters heart, in fact most people do not know what it is until they know someone with it. Because of this, it is not funded as it should be. This research is extremely important... they are working on so many amazing treatments for heart defects now but in order to keep that research going it must be funded. Bryson being in school, brings home a form to raise funds for specific organizations at least once a month if not twice a month. They are all different (and we support them all completely), but he has FINALLY brought home information about children with sick hearts... after FOUR years we have finally seen just a small amount of information about children with sick hearts. I was in tears this day along with being in complete shock. Even though I was so happy about this, it's just not enough. (where I live) There are no walks, fundraisers, or any other kind of funding for CHD. NONE whatsoever. In fact, it's not even easy to find a good solid place to fund CHD research directly online. It breaks my heart because it could mean so much for all heart babies along with Bentley. Future research just might change whether or not Bentley has another surgery in the future. It's impossible to know if she needs another surgery (at this point) but most children with her defect do need another. Eventually, if she needs another, research will decide whether it's open heart surgery again, or a heart cath which is less invasive and not near as intense as open heart. This is just one tiny example of what research is doing, there is so much more that is forming from research, I talk a little more about that below. (It's HUGE)
In the picture above, is Dr. Fraser, he is Bentley's amazing heart surgeon, you know the one I talk about so much!! God has truly blessed this man... he does amazing things and has a list of accomplishments that is never ending. He is such a hero to so many people including our family. Such a blessing to us. There are not enough positive words to describe Dr. Fraser. He forever holds a special place in our hearts. And yes, this is the world famous surgeon that we are sending my daughter's (Bentley) book to, just to share a piece of our heart with him.Now about the charity... it is called "Fraser's Friends". The goal is to help heal sick children with congenital heart disease/defects. I'm going to get a lot of this information from their website because I can't describe it any better. -- I need to first off mention that I watched a webinar of Dr. Fraser in Feb. and he mentioned that in research at this very moment that are working on BUILDING REPLACEMENT HEARTS!!! (Needless to say I was in absolute shock) Yes, this is what funding chd research is doing. Simply amazing!!!
"Replacing a valve, closing a hole, repairing and rebuilding a heart—all on an organ the size of a strawberry… For Dr. Charles D. Fraser and his world-renowned congenital heart surgery team, it’s just another work day, but for the parents whose child is on the operating table, it’s hope for life.
The Congenital Heart Surgery team at Texas Children’s Hospital mends tiny hearts from across the state, nation and globe. This year alone, they will conduct more than 800 surgeries, including some of the most complex cases. The highly specialized team of surgeons, anesthesiologists, perfusionists, intensive care nurses, intensive care cardiologists and other professional staff is one of only a few fully integrated, completely dedicated congenital heart surgery teams in the U.S.—and the only one in Texas. Unlike most other children’s heart centers in the nation, all of our personnel work only at Texas Children’s and are focused solely on those patients with congenital heart disease"
Fraser's Friends seeds funding for pediatric heart research along with many other important factors such as equipping of laboratory research space, center for clinical outcomes research, cardiac valve research, and so much more. These are all extremely important to me because it's Bentley's (my daughters) future along with 1 out of 100 babies that are born. Yes, 1 out of 100 babies are born with some form of CHD. Our children are never actually healed... they will have their heart condition for the rest of their lives... so this research is everything to moms like myself. I could go on for a while with this topic so I will end it here. Again, just remember at this very moment in research they are working on many things but one HUGE one is BUILDING REPLACEMENT HEARTS!!! That is a true miracle within itself and could save MANY lives. No, I KNOW it will save many lives!!!!
*** You can read more about "Fraser's Friends" here (that is also where I got the above info) on Texas Children's website and you can donate any amount to "Fraser's Friends" here.
