Is there no cure for this?

The health news about our children is upsetting...

As you know, I am not a healthcare professional. And I don't have much interest in the healthcare sector. But I am one of the millions of retirees who have been complaining about healthcare costs lately. On the one hand, I complain about healthcare costs, medication and treatment expenses, but on the other hand, when I see the frequent requests for help for children with DMD in the press, I forget my own troubles. Seeing the frequent news stories about aid organizations and donation appeals made me wonder, "Why isn't the government extending a helping hand to this disease?" To answer the questions in my own mind, and probably yours too, I decided to step out of my comfort zone a little and write a current research article this week instead of a short story. First, I researched DMD online to learn more about it. Then, I tried to understand why patients are so in need of help. Why isn't the welfare state stepping in here? Why are families going through these hardships for their children? My blog post, written from a citizen's perspective, is below…

First, let me reiterate: this is not a health recommendation or research paper. It is simply a piece I wrote based on empathy, asking myself what I would do if I were experiencing this condition today. As I mentioned in my blog post "Have We Become Indifferent?" published a few weeks ago, "If you can feel pain, you are alive; if you can feel another's pain, you are human…

According to the statements on the Ministry of Health's website, DMD disease, or Duchenne Muscular Dystrophy (DMD), is a genetic neuromuscular disorder. According to the technical explanation on the same page, "Due to X-linked dystrophin deficiency, patients develop progressive muscle damage in all muscle groups; death occurs before reaching middle age (around 20 years old) due to respiratory and heart muscle damage. It occurs in approximately 1 in 3,300 male births; females are rarely affected and experience milder symptoms."

In my opinion, if we summarize this rather unclear explanation in a sentence that we can all understand, DMD is a genetic muscle disease that occurs in childhood and causes progressive muscle weakness. This disease usually appears in boys and, over time, affects basic skills such as walking and moving, seriously reducing quality of life. And unfortunately, experts say that individuals affected by this disease can live for around 20-25 years. It's very difficult to empathize, but let's try; you have a child and they have been diagnosed with this condition. Watching them spend their entire childhood and adolescence shuttling between the hospital, doctors, and home, knowing they may slip away from your grasp before even finishing college… I am absolutely certain that many parents would pray to God, "Take years from my life and give them to my child."

Looking at the world, it is estimated that there are around 300,000 patients with DMD globally. Medicine is currently somewhat helpless against this disease, but as with any similar condition, there are treatments that have been reported to yield positive results. For example, you can find useful explanations about the available treatment options on Hacettepe University's website via the following link. Based on information I gathered from the press, I saw that the annual treatment cost is around $700-800,000. This answers my question of why the state does not pay for it. While I find the question "Why doesn't the government provide support?" asked by desperate families to be justified, my research shows that the fact that no treatment can completely cure the disorder and that no effective drug has been approved by a national or international authority may also be a valid reason for the government. Nevertheless, watching our children slip away before our eyes is unbearable. Therefore, even if there is only a small chance, everyone would want to seize it.

While discussing DMD, it is also necessary to say a few words about SMA patients. Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD) are genetic musculoskeletal disorders, both of which are hereditary and can cause severe limitations in muscle function. According to September 2024 records, Zolgensma Therapy is medically reviewed as a one-time gene therapy administered to children under two years of age with spinal muscular atrophy (SMA), and it is estimated that a single treatment costs $2.1 million.

Ultimately, whether it's DMD or SMA, these types of diseases cause many families to experience difficult times. I believe that it is the duty of the social state, community organizations, and all of us to support and reach out to these families, who are seriously affected both financially and emotionally.

A fundraising campaign is underway in Izmir for a child I follow, Giray Aslan. You can contribute by texting BAGIS to 7897 to help this child regain his health. The campaign is supported by Haluk Levent and the Ahbap Association. I have also put some of the images I took on my website up for sale for this campaign. I am trying to support this campaign by framing the selected pictures.

I think we can understand the necessity of this more clearly by showing a little empathy.

Yes, in my article two weeks ago, I asked, "Have we become insensitive?" But of course, this statement does not apply to everyone. There are still people among us who, like you, have a conscience and feel the pain of others. The world continues to turn for the sake of these empathetic people.

I wish you a healthy and pleasant weekend.

Let's meet on my blog every Friday at 7:00 p.m.