Ashton Kutcher could be our Danny Thomas

We’ve all heard of Ashton Kutcher, right? He played Kelso on “That ‘70s Show” and he’s currently starring on “Two and a Half Men”. He’s Demi Moore’s ex-husband, Mila Kunis’s fiancé, a newly expectant father, and he also played Steve Jobs in a biopic.

Since his years on “That ‘70s Show”, he has proven he’s much smarter than Michael Kelso. According to Wikipedia, he was worth upwards of $140 million as of March 2013, thanks to savvy investments in companies such as Skype and Foursquare and endorsements for Nikon.

What some of you might not know is that his twin brother Michael suffered from pediatric cardiomyopathy. Michael underwent a successful heart transplant in his early teens.

Kutcher has gone on record about the traumatic effect of cardiomyopathy on his family saying that, “He didn’t want to come home and find more bad news about his brother” (Wikipedia). He even threatened suicide at one point, so that his brother could use his heart. Luckily, his dad talked him out of it and his brother received his new heart shortly after.

Why do I say he could be our Danny Thomas? I’m not sure how familiar a name Danny Thomas is anymore, so let me give some background.

Danny Thomas was the star of the popular sitcom “Make Room for Daddy”, later renamed “The Danny Thomas Show”. He was also a very successful producer of such shows as “The Dick Van Dyke Show”, “The Andy Griffith Show”, and “The Mod Squad” (Wikipedia).

Many might not realize that he was also the founder of St. Jude Children’s Research Hospital in Memphis,Tennessee. St. Jude’s is most famous for treating children with cancer and never turning anyone away due to inability to pay. According to Wikipedia, they are dedicated to helping children with “catastrophic diseases”, but they are most associated with pediatric cancer treatment and research. Thomas’s daughter Marlo Thomas, a famous actress in her own right, is now St. Jude’s National Outreach Director. You might have seen her on “That Girl”, on “Friends” as Rachel’s mom, or in the St. Jude’s commercials. J

St. Jude’s was a game-changer for pediatric cancer. According to Wikipedia, since St. Jude’s was founded in 1962, the survival rate for acute lymphoblastic leukemia, “the most common type of childhood cancer”, increased from 4% to 94% today. The overall survival rate for childhood cancer has risen from 20% to 80% in that same amount of time.

Children with cardiomyopathy have not seen any change in outcome in 30 years. The five-year survival rate for children with dilated cardiomyopathy, which Lucy had, is 40-50%.

We need a St. Jude’s and a Danny Thomas for kids with cardiomyopathy and ALL other congenital heart defects and pediatric heart diseases. It is long, LONG overdue.

I think Ashton Kutcher could be our Danny Thomas. He has a personal connection to the disease, he is very wealthy, he has a substantial presence on social media (He was the first to have one million Twitter followers.), and he has shown an interest in social activism, such as fighting malaria and protesting human trafficking.

It is possible that he has donated money or been active in the fight against pediatric cardiomyopathy privately. It is also possible that he stays away because he believes it to be a hopeless cause or because he doesn’t want to relive the painful memories of his brother’s illness.

I get it. I experienced days where I just couldn’t take hearing more bad news about Lucy. I cried after almost every appointment with the cardiologist. Sometimes I worry that doctors think that pediatric cardiomyopathy is hopeless and they need to focus on the kids they can save.

I refuse to believe that pediatric cardiomyopathy is hopeless. Only 10 or 15 years ago, I read a cover story in “Time” that outlined in dismal detail why HIV was incurable. Thirty years ago, it was a death sentence.

Now three people that I know of have been cured – no trace of HIV can be found in their bodies.

Cystic fibrosis was considered hopeless as recently as the 1970s and 1980s. Now people with the disease can live into their 40s and as far as I know, there is still every hope of finding a cure.

I’ve already outlined how much brighter the outlook is for children with pediatric cancer.

Pediatric cardiomyopathy is NOT hopeless. If we can cure HIV, we can cure cardiomyopathy. If we can eradicate smallpox, we can cure cardiomyopathy.

Much of that change took place because of celebrities taking up the cause of various diseases and using their fame and good fortune to fund research. Elizabeth Taylor made a huge difference in the fight against AIDS. Frank Deford wrote a best-selling book about his daughter Alex that became a TV movie. It exponentially raised awareness for cystic fibrosis. Ashton Kutcher has influence and resources that most families of pediatric cardiomyopathy patients can only dream of. He has the power to help other families who are enduring what his family did and even to stop it from happening. If he spoke up, people would listen. He has the money to make the same difference that Danny Thomas did.

Danny Thomas started St. Jude’s, because he prayed to St. Jude Thaddeus for a better means to support his family and his prayers were answered. He paid his success forward and lives continue to be saved thanks to him, even though he is long gone.

The fact is, we pediatric cardiomyopathy patients and families don’t care who we get. Ashton would be great, but we just want someone, anyone with the influence and means to make a difference to do it. They don’t have to have a personal connection. I don’t want anyone to feel pressured to do something that would be painful for them.

However, I think that, if Ashton Kutcher stepped in and drew attention and money to this cause he could make all the difference. He could be our Danny Thomas. And I think it would go a long way towards healing his pain, my pain, and the pain of so many who have lost children to cardiomyopathy. Not to mention that it would save countless lives.

 

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