Hudson's Journey: Cole's Law
EDITOR'S NOTE: CJ and Mika Hartman are personal friends of The Bolton News's publisher, Clay Mansell. We wanted to use our publication to share Mika's journey as she works to change laws, perceptions and anything else she chose to tackle to make our state a better, more inclusive one. Her son, Hudson, has Down Syndrome, and she will share his journey and hers as she works with lawmakers to make Mississippi a better place to live for everyone. Please visit our website to view her blog and important information on how we can all help make Mississippi better.
As we tiptoe into 2022, I am hopeful and, yet, I am angry. It's 2022 and we are still so far behind in protecting the biggest treasure we have: All Human Life. Mississippi is proudly leading this country down a new path, one that is long overdue; but we still have so many laws that don't show Mississippians the real value of life. It's time to prove how we not only love the baby the moment he/she is conceived, but, also, how we value each individual throughout their entire life.
One area that people use against pro-lifers is that we only care about the baby in the womb. While this isn't true, we still have far too many laws that hold people back from living their lives and many laws that discriminate against people. As a pro-life conservative woman, I see a need to make big changes to reflect what our state stands for.
Did you know that a person, no matter their age, can be discriminated against for needing a life-SAVING organ transplant? I have heard denials of persons (all ages) born with Down syndrome being denied. Yes, simply for an extra chromosome, a doctor can deny them. Its discrimination here in the US in 2022. Barbaric. Outdated.
Two tragic stories I would like to share about this is Daniel's and Zion's. And I have a celebration story of Charlotte Woodward, as well:
Let's start with Daniel Kirwan from Texas. Sadly, Daniel passed away in 2015 after being denied a life-saving kidney transplant. Simply the diagnosis of Down syndrome kept his team from adding his name to the transplant list. His sister, Kathleen, and the entire family questioned why they didn't even look to see if he would qualify for this needed surgery and learned that his life wasn't deemed a life worth saving; a man that brought his family joy and laughter and love every second. After he suffered and then passed away, they knew they needed to bring change. Kathleen worked diligently to pass Daniel's Law (Organ Transplant Discrimination Prevention) in Texas. You could (before this law passed) file a complaint and wait to see if your claim would be revisited; we all know in a life-saving emergency surgery, time isn't something that a person dying has much of. Also, the pain one suffers while waiting. How sad is it that a person would be left in limbo and told they aren't eligible all while suffering, but, "hey, please file this paperwork!"? The stress and horror the family feels, too. This isn't pro-life at all! Thankfully, his sister is seeing that her brother's fate isn't repeated, while she daily mourns the loss of her baby brother and the love they shared. Daniel Kirwan Day is celebrated in August.
Baby Zion's story is fresh and the wounds are still weeping. Zion Sarmiento was less than 4 months old when he passed away in Florida. Like Texas, Florida passed (in June 2020) the Organ Transplant Discrimination Prevention Law. He shouldn't have been denied the heart transplant that he needed, but he was. Multiple heart surgeries were tried, but ultimately, a transplant was his only hope. I understand that the family was told, "Zion has Down syndrome, we CAN'T WASTE a heart like that" by his doctor. The family desperate to save him even tried another state (Georgia) and were denied there, too. Multiple hospitals turned them away. This precious baby and his family were told no, over and over, even with the law in place. Baby Zion's photos are forever in my heart. His smile was pure joy and his family deserved better. Shame on anyone who would take a vow to save lives and then choose who they save. Heartbreaking for us all.
Now, to a story that proves why this law is needed in our state of Mississippi AND across our nation: Charlotte's story. Charlotte was told YES! Her team loves and values Charlotte, they saw/see her worth. Charlotte Woodward is one of the most remarkable humans I have met. She is the first to tell you that she wouldn't be alive if she hadn't received her heart transplant. Her surgery was performed in her 20's. Charlotte is now in her 30's and speaking up daily for all her friends to be given the same chance she was. Charlotte is a college graduate, works for NDSS, has been featured in Forbes and you'll find her fighting for this and all equal rights for people living with Down syndrome. She is a gift and her voice and power will create a change for thousands. She was given a chance; one she deserved and is making the most of. The Charlotte Woodward Bill has been introduced at the Federal Level in both the House and the Senate this session.
My Hudson was born with a large hole in his heart. At 3.5 months old, he underwent open heart surgery. The surgery was successful for the hole repair, but he still has a leaky mitral valve. Hudson will need another surgery to replace his valve. I think of this one (the law and the discrimination) very personally. How should a mom, dad, or family feel when a huge piece of their heart is suffering and in need and they can't help? I'm crushed knowing this happens. How unfair. How much discrimination should be tolerated? The answer is NONE. I understand demand and availability, but to deny based on valuing a persons life is unAmerican, at best.
The solution for Mississippi: Cole's Law. Cara and Cole Sims have introduced (two years in a row) the Organ Transplant Discrimination Prevention Act in the House. Due to Covid and other pressing matters, it sadly has been overlooked. But, not this year. We, together, have increased the co-sponsors and even have it being introduced in the Senate, as well. House: Rep. Lee Yancey, Rep. Jansen Owen and Rep. Becky Currie. Senate: Sen. Jeremy England. We welcome anyone to add their names to this very bipartisan bill to save lives and protect those who have been far too long unprotected.
Cara and Cole Sims live in Bay Springs. Cara is super active in the Down syndrome community and a true leader. Cara is on the Mississippi Down Syndrome Advocacy Coalition and her heart is gold. She is doing this to see that children like Cole and Hudson never feel this discrimination. So that families have hope and peace in hard diagnosis. Also, so that new moms stop having to fear this journey. And COLE! He is awesome. Cole is 4, loves animals, loves Elmo and is such a beautiful boy. He has a life worthy of living and a heart worthy of loving... He is a wonderful gift.
You can be a voice for this change. Please reach out to your representatives and ask them to act on Cole's Law. Think of someone you love and the mountains you'd move to protect them and save them; moms of children with Down syndrome often have the largest mountains to move and they do it no matter how hard. Help us.
"Be kind whenever possible. It is always possible." -The Dalai Lama