tal If your child had the #1 birth defect, and then you found out that not only there was not hardly any research going on, but there is very little funding for research? That the one organization you would assume is putting money toward research is only putting .01 of every dollar toward research of Congenital Heart Defects?
Everywhere I look, there is funding for childhood cancer ~ there is much awareness. **Please understand** I am NOT belittling what children with cancer go through ~ or their parents. I know it's bad. My point is awareness. Not "competition" of things wrong with our children.
More children die from Congenital Heart Defects (CHDs) than all childhood cancers combined. And there is little research happening. There is little being done besides playing defense and palliative care ~ and I am very thankful for the excellent Drs, surgeons, nurses and therapists that care for Jethro in this way.
I'm including a video done by an amazing young woman that I have had the priviledge of meeting. Jessi just turned 21 and she has HRHS ~ the right side of her heart didn't develop like it should have. She has had several surgeries, and has a heart full of love and compassion for her fellow CHDers. Jethro is in this video. It's long, but those shown in the video are just a miniscule fraction of the number of CHDers out there.
If you ever give money to the American Heart Association, would you consider earmarking it for the Zachary Brooks CHD Endowment? 100% of all monies donated to the Endowment go toward CHD research. The AHA also has the Legacy of Life Endowment , which provides funding for CHD research (thanks, Lisa!).
If it were your child ~ how would you feel?
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| Jethro showing off his "zipper" and his "button". |
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Thank you for sharing, it was very educational, I will pass this on to family and friends.
ReplyDeleteThe AHA has the Legacy Of Life fund that provides a perpetual funding source for congenital heart defect research.
ReplyDeleteDonations can be specifically designated for this fund, too.
I found out about your blog from Bowensheart. I am a CHD mom of a HLHS boy who is now 6 yrs of age. He once had a button like Jethro but it was removed almost 2 years ago. We had not used it for a little over a year before that. I'm sure Jethro will get there some day, too.
ReplyDeleteThanks for the info. about the funding at the AHA. This will also be helpful and I can pass the info along to others who will be interested, too.