First off, I want to thank everyone for all their love and generosity during the last year. We couldn't have gotten through everything without your help. As Lu grows and her health continues to improve, I realize how big of a part you all played in our journey. We are truly grateful for your support and we hope you are as pleased with Lu's progress as we are! We are tremendously lucky, in many ways, but mainly because of the fact that Lu was able to have the open heart surgery that saved her life and has allowed her to grow into such a beautiful and happy young lady.
I'm sure most of you have seen the MANY links on Facebook that I post about CHD and I want to thank everyone who has read the information and passed it on. The CHD community is so important to me and I couldn't have gotten through the last 10 months without the support of my fellow “Heart Families.” When our family first started on our journey, I had so many questions and craved first hand perspectives and stories that I could find hope in. That is one of the reasons why I feel it is so important to share Lu's story now; to help other people who are going through what we went through.
Congenital Heart Defects are so common, affecting 1 out of every 100 babies born in the United States. It is a wonder that I had never heard anything about them before Lu was diagnosed. Having that information, before Lu was born, could have helped us a lot during the 2 weeks that we were trying to figure out what was wrong with her. For other families, not having this information, has led to tragedy. So many children go undiagnosed and never get the treatment that could save their lives, which is why I try to raise awareness and inform people about the signs and symptoms of CHD. Our family was lucky and now I feel it is our responsibility to prevent the tragedies that unnecessarily occur at such an alarming rate.
But I still need your help, if you are willing to give it. I have narrowed my mission down to four important goals, that can help save the lives of innocent children just like Lu:
- Raising General Awareness- Everyone should know about CHD, not just pregnant women. Everyone knows someone who has a child or plans on having children, even if they don't, themselves. Just sharing information on Facebook can help raise awareness. If you pass on the message, it has the potential to spread to someone who might find it useful. Spreading this vital information, especially online, can save lives. You can find some very useful information about CHD in the tabs at the top of Lu's blog.
- Fundraising for Research- There are a handful of foundations that focus primarily on raising money for research, including the Chloe Duyck Memorial Fund: The Chloe Duyck Memorial Fund falls under the umbrella of CRSTI (Cardiopulmonary Research Science and Technology Institute), a well respected non-profit organization focused on helping to develop new cardiovascular treatments and technologies that will enhance patients care and clinical outcomes. www.hope4tinyhearts.com. Another foundation I have been working with, that funds a lot of research and helps families affected by CHD is The Pediatric Heart Foundation. It is run by a heart mom in South Florida and is a great group.
- Pulse Oximetry- This non-invasive and inexpensive test should be mandatory for all newborn babies whether in a hospital, birthing center, or at home. Please read the information on Lu's blog about Pulse Ox Testing: http://littlelufavero.blogspot.com/p/chd-facts.html
- Helping Other Countries- As I mentioned, in the U.S., children are born with CHD at an alarming rate; about 1 in 100 babies or approximately 40,000 babies each year. That statistic is frightening, to say the least. After several months of searching to find an organization to focus my efforts on, I found Operation Healing Hearts and Preemptive Love Coalition, where I learned that in some parts of Iraq, babies are even more likely to be born with CHD; about 1 in 10! The fact that life saving surgery is not even available to some of these children makes that statistic even more unsettling.
You can also visit the Central FL (In Honor of Little Lu) OHH page and keep updated on any local events we are having HERE.
Another, more long term, action that I am taking to contribute to this cause is getting an education in cardiology. From the encouragement of one of Lu's Echo Techs, I have decided to work on a degree in Cardiovascular Technology. If all goes as planned, I should graduate in 2014 and be able to start a career helping kids and families who are on a similar journey to ours. I am excited that
I have finally found my path and I can't wait to see where my education can take me in the future.
I realize that I ask a lot from my friends and family, in regards to my goals in the CHD community, so I invite you to share any causes you may be passionate about with me and I hope I can help you too! I also completely understand if you are not interested in joining my efforts. I know many of you are busy and have your own ideas about causes that are important to you and that is great too.
If you have any questions about CHD, want to get involved, or have some ideas please email me at KimberlyFavero@yahoo.com. I have a lot of great ideas and plans on how to raise money for Operation Healing Hearts so if you want to help me out, that is great! If you own a local business or have some sort of community connection, I have tons of ways you can help too. As usual, you can keep updated on Lu and our family through her blog and on Facebook.
Thank you!
With all my love,
Kim <3
Heart Mom to "Little Lu" ASD and PDA
