Jacob Kilby

Jacob Cropped

I want to introduce you to an amazing young man who will change the way you look at the world.

Jacob Kilby is a young, 19 year old local San Diego surfer who is facing a major health challenge. You often hear about many children and adults that are battling cancer or diabetes, but congenital heart defects seem to be few and far between. Heart disease is a major problem for both the new, young, and mature people of the world. Many times when you do hear about unhealthy hearts it’s in reference to a person who has lived many years and perhaps did not treat their heart as good as they should of. Those stories that start with a newborn baby who will have his first open heart surgery at the age of 5 days old are not plastered all over the media. I want to make a difference for the San Diego community and possibly beyond, by educating and promoting organ donation awareness through the story of Jacob Kilby’s heart.

Jacob was born with Hypoplastic Left Heart Syndrome where the left side of his heart did not fully develop. This is a rare condition that is one of those congenital diseases that we don’t know how or why develops in a certain fetus. We can’t blame it on how a woman treated her body or what she did or did not eat while pregnant. It’s an unfortunate circumstance that happens and Jacob was born on Sept. 8 1995 with this disease. He was born strong and ready to take on the four open heart surgery attempts at fixing his heart, all of which failed. Jacob was very lucky to receive a life-saving heart transplant in 1998 that saved him just in the nick of time.

Jacob has lived a wonderful life. He was able to do almost anything any other boy his age could. Despite the daily doses of anti-rejection meds and the numerous doctor visits, Jacob sailed through school and was liked by everyone. His family adores him and treasures him as if he were a diamond. His smile shines so bright that he truly must be a treasure. So, the news of his need for a new heart came as a devastating shock to all of us, including him just a few months ago.

As the days have passed, I have learned a great deal about the world of organ transplantation. I learned that Jacob is on the wait list at a stage “2” where he really has no chance of getting a new heart. Those who receive organs are those who are on the list the longest and those who are the sickest. So, I guess things haven’t changed in that respect in the 17 years that he’s had his donor heart. His family watched his frail little body diminish and lose oxygen right before our eyes. And here we are again.

The amount of organs available for transplant is not even closely comparable to the amount of people on the wait list in need of an organ. There are currently 123,000 people nation-wide on the national organ transplant wait list. Eight people die every day waiting for an organ that will never come. Millions of families wait in agony every day, never knowing if their loved one even has a future.  Please help us create more opportunities for more futures for people with congenital heart defects like Jacob Kilby.

Aunt Charity

You = Winning! The Importance of Advocacy

Throughout the month of October, PCHA is helping advocates meet with their legislators in district.  In this post, Tiffany takes a humorous look at why it is important to rise above the politics and meet with our legislators.  For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

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Although the polls may indicate the current recess on the Hill is a much needed respite for the general public, for advocates it is the perfect time to visit your legislators’ office.  Whether your elected official is involved in a re-election effort or not, call their district office to schedule an appointment to meet with them while they are in-district during the month of October.  If your elected official is being challenged in an election, call the campaign office of their opponent and schedule an appointment.

The visit(s) should be relatively painless as your mission is not to ask for money.  Your goal is simply to create or refresh their CHD awareness by telling your story and introducing, or re-introducing, the realities of congenital heart defects.  Your story, your voice and your visit help humanize the cause.  Many incumbents trying to retain their seat may be trying to change the public’s perception of their image by refreshing their vision and commitment to the needs of those they represent.  Many challengers of current House seats are looking for opportunities to better understand the needs of those they represent.  Either way it is a great time for a visit, your story and CHD awareness.

But before you go, a quick Q & A that you may find helpful!

Q: Ugh!  I can’t stand my representative.  I will never, ever, ever vote for them so why should I visit them?

A:  Trust me, I can relate…oh, how well I can relate!  BUT, I try to keep in mind that my representative was elected to represent me.  Telling my story and sharing the realities creates the opportunity for them to truly represent me, represent my child, and represent my family.  Whether or not they use the opportunity to represent me better as a constituent is up to them.  And whether or not they use the opportunity may never have an impact on my opinion of them or my vote.  But creating the opportunity will give me a chance to get a better ROI on my tax dollars that constitute their salary!

Q: Do you know what my representative said about (insert any issue here) or voted regarding (insert any issue here)?  How can I even speak to them without spitting on their shoe?

A:  Again, I can truly relate!  It may take an enormous amount of self-control to keep my voice loathing-free but I know I will move mountains for my son and those like him who are affected by CHD.  When I meet with my representative, I use my story to try to appeal to their emotional side as a fellow parent.  I use the realities to appeal to their intellectual side as a representative of my district and one who has some aspect to funding needs I want to discuss on a subsequent visit.    Bottom line, when I walk into their office I am my son’s mom.  My goal is to get their attention and gain their support for the needs of my son, the needs of CHD.  I understand that we may never agree on other issues in our country or world but if I can get them to support or agree on the needs of CHD, I can work with that.

Q: Why worry about my representative if they are likely to lose or why work with the challenger if they are unlikely to win?

A:  Because you just never know!  You don’t necessarily know who will win or who will lose.  You will win either way if you cover your bases with both the challenger and the incumbent.  You win because you began a potential relationship with the winning representative.  You win because the candidate who didn’t win may be able to be an ally in the fight or a great source for contacts who will be.  You win because both have heard your story and a little more awareness was created in the process.  You win because successful and unsuccessful candidates generally maintain some sort of a political voice that you may be able to use.  You win because there is a good chance it won’t be the last election run for either one.

So to you summarize: You = Winning!

For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

Tiffany headshot  Tiffany Mytty-Kline has been a tireless advocate for the congenital heart community.  She has worked to unite others in peer-to-peer support, raising awareness and both local and federal advocacy.  As the mother of two boys, the oldest of whom has a complex congenital heart defect, she knows the incredible impact CHD can have on a family.  When she is not advocating for her son or the CHD community, Tiffany is an adjunct teacher and the director of employee relations for a midwest truck dealership.