“Would a Heart Transplant be a better option.” Is all I asked.
“Malix does not qualify for a Heart Transplant.” Dr. A responded.
“If Malix did not have Down Syndrome, would we be looking at a Heart Transplant.” I asked. The answer shocked me.
Imagine this, the time December 2017. We are in a meeting, the meeting. In the small room is Michelle, Amanda (Michelle’s Sister), Dr A, his team and myself. I’ve talked about this meeting a few weeks ago in an earlier post about 3 options, 1 decision. There were really multiple takeaways from that meeting. The thing is that each item really needs to be looked at individually due to the magnitude. We are going through the heart issues, then there is a huge wrench in the heart. Malix’s heart needed 2 new walls built, easy right. We’ll the “nubs” to connect the vertical wall is not 50/50. It’s more 60/40, making the surgery team not as comfortable with the procedure. It get’s quiet. The team says this is our only shot. So I bring up the question about a Heart Transplant. I know a Heart Transplant is not something that they have sitting around, but hey, it’s worth bringing up.
Then I’m told something, something 38 months later I still haven’t fully processed. Our son, our awesome wonderful life changing son, is not eligible for a transplant because of the fact he has Trisomy 21. Does having a 3rd chromosome on #21 make it impossible to hook up a new heart? Does having a 3rd chromosome #21 make his body reject a heart from someone with 2 chromosomes on #21. We are at the University of Wisconsin working with the Heart Team. The finest Doctor around is sitting in front of me, looking me straight in the eye, telling me he can not preform a Heart Transplant on my son. Say that again, He CAN NOT perform a needed Heart Transplant on my son.
According to the UW website as of 3/6/20, the median wait time for new heart is 28 days, Malix CAN NOT have a wait time. US News and World Report ranks University Hospital number one in Wisconsin. The Headline for a UWHealth webpage on Heart Transplants reads : “End Your Transplant Wait” We are at the University Hospital, the #1 Hospital. But it’s not up to them. Our family is going to change that.
In Wisconsin, if you have a disability, you will not get a Transplant. If you have Autism, you will be passed, if you have Down Syndrome, you will be passed. This has to change.
Recently I have been reading about Gracie’s Law. Gracie’s Law has passed the House in Georgia, onto the Senate. Essentially it eliminates using a disability to discriminate against someone for an organ transplant. There are 11 states that have passed similar laws. Those states are: California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana and Indiana. There are 39 of us who live in states where a person with a disability is discriminated against for an Organ Transplant.
To my fellow Wisconsinites (yes it’s a real word, possibility my favorite word) , right now is my action time, soon will be yours. I have been in contact with my local State Rep and Senator. Senator Fitzgerald’s office and I have exchanged a few e-mails. So far they seem interested but need to do more research. I believe that they will be shocked at what they find.
Today I received a call from Representative Born’s Office. They were also very thankful for me contacting them. They were surprised to hear that this discrimination is allowed. Both offices let me know the 2020 session is closing and it would be something for January of 2021. That may seem like a long time, but I am very happy with that.
I said before I haven’t fully processed this yet, I don’t know if I ever will. I have many goals in life. Add a parent in Wisconsin never having to hear “Your child is not eligible for a needed life saving transplant because they happen to have a disability” to the list.
Here’s what I need from you. Get ready. When this bill hits the State, I need you to call / write / e-mail your Wisconsin State Senator or Rep and tell them how this needs to change. Don’t bug them yet. If your friends with Senator Fitzgerald or Representative Born, drop them a note. Tell them they are lucky to work with the Kulczewski family.
If you have Media Connections get ready to tell them of this bill, make Malix the face of change for good in others. We’ve always believed he’s the super hero in all of us.