Remission Doesn’t Exist in the Heartland

As many of you know we are planning a fundraiser for Izzie’s Miles for Miracles Team which in turn raises money for Boston Children’s Hospital. I chose this charity because of the universal opportunity investing in a children’s hospital provides. Many children we know have been patients this past year on 8 as well as floors 6 and 9. I thought that people could identify with knowing someone and feel a connection with the hospital. Izzie is a patient partner, which means her story is what has inspired two runners to take on the Boston Marathon in her name. It’s incredible. Her heart disease is why we have moved in for days, weeks at a time so I felt that our effort could be focused on the place that have her life.

I decided to have a silent auction to raise additional funds and Chris emailed the home teams’ charities to see if we could get tickets to have at our auction. So far we have been accepted by the Red Sox and that’s it. My brother and sister in law have been kind enough to provide some Bruins tickets, and another cousin is trying to help me get some goodies from the Garden. I was (and still am) thrilled that people want to donate. Until I received an email this afternoon from the New England Patriots declining to help us out.

Dear Elissa,

The New England Patriots Charitable Foundation received your request for a donation. Unfortunately, due to the volume of requests we receive on a daily basis, it is impossible to accommodate every worthwhile cause. Therefore, we must respectfully decline this opportunity to assist you with your efforts.

We wish you the best with your fundraising endeavors.

Sincerely,

The New England Patriots Charitable Foundation

I didn’t realize raising money for Boston Children’s wasn’t a worthy enough cause for you to spare a set of tickets for the nosebleed section. BCH is the only reason why she is alive so to me, raising money is important. Her surgery did not cure her. She isn’t going to instantly grow a left ventricle. Doctors can’t make one. She will always have this condition. And what I don’t understand is why I am constantly blasted by messages about pediatric cancer while there is nothing NOTHING about congenital heart disease on television. Why is cancer more tragic than having a child who has to undergo countless surgeries, be exposed to more radiation than any person ever should be, or suddenly drop to the ground in front of their parents’ eyes? Tell me how that is different and deserves more money than a condition that will never go into remission.
Watching the Super Bowl last night and an ad comes on for a World Cancer Day on Feb 7. Really?? On the same day CHD awareness starts? Are you fucking kidding me??? Why is it ok to keep pretending as if one disease is worse than another? You think I enjoy watching my daughter gasp for breath after running around my living room or turn blue for no apparent reason? Do you think I don’t worry about her next surgery when I try to sleep at night? You think I enjoy feeling the wires that hold her sternum together when I get her dressed? Her disease stares at me in the face as much as cancer stares in the face of other parents. Sometimes I feel like CHD is something we should be ashamed of, or that people don’t want to talk about. Shaun White certainly doesn’t want to. He’d rather raise money for St Jude than to speak about his tetralogy of fallot- a disease that recently took a beautiful girl from her mother’s arms yet he can represent our country at the Olympics. The freaking Olympics.

Most of the time I enjoy every moment I have with Izzie. Then I have days when I wonder what her quality of life will be like.
Raising money for Boston Children’s helps her outlook. It helps the researchers who are trying to find an answer as to why these defects happen. They want to know what gene is responsible for affecting the structure. And yes, they are genetic so those if you who have been repaired and think you are cured- think again. Your son/daughter should have an echo to rule out any structural issue. But how would you know that? It’s not like there are any public service announcements out there telling you about the latest genetic findings or how these defects can tear their ugly heads. No, you’ll just read about these student athletes who suddenly drop dead because they had a defect that went undetected.

I know what I sound like right now.  I wish we didn’t have to constantly compare diseases. However when I hear about one organization raising millions for pediatric cancer in one day while the Children’s Heart Foundation is grateful for the $100,000 they raised over a few months, I want to scream. I want to scream what about my daughter? What about us? What about the children who have surgeries and then have complication after complication? Who is speaking for them? I am not speaking, I am shouting from my own rooftops. CHDs are not cured by surgery. Isabelle will ALWAYS have half a heart. The fontan surgery that she will have in the fall isn’t a great solution. It will add stress to her liver. Her heart will eventually weaken. Did you know the right ventricle is not meant to pump to the body? It is designed for the lungs alone. As it stands right now, she will need a transplant when she is a young adult or maybe even sooner. One never knows. Just like one never knows when cancer is gearing up for a comeback.

To my friends whose children have suffered with cancer, I am sure this must seem like a “whose disease is worse” argument. They are both terrible things that happen. One happens to healthy children and the other children are born with. Both can die from it.  My point is that CHDs and cancer have similar outcomes and should be treated as such by the media and by the world. For example, The American Heart Association can give the red dress a rest and inform the public on congenital heart disease. If you are dealing with the heart, than deal with ALL of it. Not just the conditions brought on by poor diet, smoking and lack of exercise. Deal with the conditions these babies are born with by no fault of their own.

Imagine that your child has an illness that people can’t see. It is unpredictable and wreaks havoc on families. It puts a strain on your marriage or costs you out of your home. It puzzles physicians and specialists. No one knows what causes it. It is an illness that has taken many childrens’ lives, some of whom you knew personally. It is a condition that happens to one in one hundred babies born every day. But no one talks about it. There are no big corporate sponsors that declare special days for it, spokespeople who advocate for it, or even similar organizations like the American Heart Association that dedicate any information on it. It’s silent. Imagine watching your child go through hell only to feel like the battle isn’t over. It’s just one more fight to get through another day, week, month or year.  A life where you can’t go outside for fear of that child getting a virus. Imagine having a child that you have to say goodbye to after every possible treatment has been given. Sound familiar?

Who wouldn’t get angry? Who wouldn’t want to scream from the rooftops? And yes, I took folic acid. I took prenatal vitamins, ate well AND exercised. I felt great. I don’t drink or smoke, and I was thrilled that we were adding to our family. When the sentence “There is something wrong with your baby’s heart”  was said in the examination room, I couldn’t believe what I was hearing.

Funding= research. Research= better solutions. Better solutions improve the quality of life. BCH already has made some incredible headway with the left ventricle recruitment surgery they have started to implement. It helps a child have four chambers instead of two or three. People fly from all over the world for this type of surgery. Our surgeon is part of that team who came up with it. I asked him if he thought Isabelle was a candidate. He wrote back and apologetically told me that unfortunately she wasn’t. Here is what said to me:

I will continue to fight for children like Isabelle and do what we can. I really appreciate the courage that you as parents show on a daily basis, and is the inspiration to keep me moving forward.

Help us keep fighting. Help him keep fighting. The Heartland is merciless and research is all we have to light our way with hope.
No parent should have to see their child suffer like we have, and other parents we know have. Regardless of what the name is- pediatric disease is reason enough for people to get together and fight it. As long as children are dying from it, there is no excuse for silence.

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