Here we report the interview made to Arthur Estopinan, father of a child with a pathology similar to the one that affected Charlie Gard. Arturito has shown improvements in his brain from the recent MRI and now he lives happy with a family that loves him so much!
Hi Arthur, first of all thank you very much for giving us this interview. It’s an honor for us. Could you tell us briefly who you are and why your wonderful son’s story is somehow connected to Charlie Gard? What was Dr. Hirano’s role and how did he accomplish its objective?
My name is Art Estopinan, I live in Washington DC and I have been working in the US Congress as Chief of Staff, Senior Member of Congress and Former Official Spokesperson for the Chairman of the House of Foreign Affairs Committee here in Washington for the last 30 years. On July 26th 2012 when my son was about eighteen months old, he was diagnosed with a mitochondrial DNA depletion disease. My son’s mutation was TK2 (a mutation that hits mainly muscles) and Charlie Gard had a slightly different mutation but within the same family. The doctor who made the diagnosis told us my son had only two months to live, that there was absolutely nothing to do and we should go home and make him comfortable as he was going to die in two months. Even though they told us these things, we never gave up. I told the doctor «thank you for your diagnosis – that took several months and reported a very severe muscular disease – but I can guarantee you that we are not taking our son home to die. My wife Olga and I will do anything in our power to try to save our son’s life». And that is what we did. If my son is fighting we would be fighting with him.
I got calling day and night doctors and hospitals all over the USA and International line as well until I was able to find, after one month, the team of experts that were doing what was called a “clinical protocol” with mice in New York City at Colombia University Medical Center where Dr. Michio Hirano is the lead investigator for these mitochondrial diseases. He told me, on early September, to take my son over and see if he was a good candidate for this clinical protocol. The clinical protocol is a program that is before what is known as the “clinical trial”, and for a disease like this they were glad to find a human being, because the babies, like my son and Charlie, die soon afterwards the diagnosis of such disease due to respiratory failure – there is an accumulation of fluids in the lungs and they basically die drowned with their own fluids.
There were a lot of problems in the transport since every time we put our son on plane he got very sick: he got respiratory pneumonia and since we are not doctors I had no idea of what to do because when you become a parent you have not a book that tells you “this is what you need to do when your baby is sick”. We made all we could for our child because of parents love for their children. My wife said we should wait until my son got better but I said no, since he started to have problems in eating and breathing. From Washington DC to New York City is about four hours, so we drove and took my son to New York. The next day he couldn’t breathe so we stopped outside New York, in New Jersey because we didn’t want to be in the traffic with our son in those conditions. When you become a father or a mother you develop a sort of extra sense for your child. So you start planning and we knew that in the New York City area there’s a lot of traffic in the afternoon and then we have planned to stay one night in New Jersey and leave the next day morning when the driving time had finished and the traffic was gone.
However Arturito couldn’t sleep at all since he had difficulty in eating and breathing and you know that a human being cannot live without food and oxygen. So I called the doctors and said “I’m sorry if I bother you but my son is very sick and is getting worse”. So they led him to the ER emergency room immediately. If you go to our website you can take a lot of information about the initial examination he made. I think it’s all in God’s hands because he was immediately accepted into the hospital and examined and eventually put in the pediatric intensive care. There were many nights in which we didn’t know if he was going to live. When I speak to you all the emotions come back. He was a baby and he was dying before our eyes. But God helped him, he made it, and I really understand what Connie and Chris went through with Charlie because they saw their baby dying every day.
When did you entered in contact with Connie and Chris? Do you think he could have been saved if Hirano’s therapy was administered in time?
Connie contacted my wife via Facebook messenger because in this time everyone is connected. And the ones who confronted the mitochondrial disease form a very small community, since it is a very rare mutation. So I had parents contacting me from Chorea, from Russia, from Italy, from UK, Spain and all over the world. Immediately I put them in touch with doctor Hirano in Colombia. Dr. Hirano provided a medical plan for Charlie’s doctors in the UK in only two weeks from Connie’s contact, but they refused to follow the plan. So as everyone knows, Charlie Gard’s doctors fought in the UK courts to have the kid died rather than fight in the hospital to save his life, which in my opinion, is a medical murder because they knew that Dr. Hirano and a series of Italian experts for this disease, claimed that with this kind of plan there were good chances to save Charlie Gard’s life. However the UK doctors thought that his quality of life would be horrible and terrible.
But I publicly stand by Charlie because I knew that my son was (and is) an happy boy and after the cures was getting stronger. The combination of being happy and getting stronger is a combination of success. And I thought that Charlie Gard would have had a success as well, thanks to doctor Hirano who is the premiere pediatric mitochondrial specialist in the world. So he was in very good hands since now there are about 30 children from all over the world on this experimental medicine. So sometimes, in the beginning, me and my wife asked why our son was suffering so much. Why was he going to die when he was born a healthy little boy? There were many questions. And then we thought that it was God’s punishment. Now we see that it’s a blessing because without my son, all these other children would have died. And once the Federal Drug Administration will have approved the medications there will be a possibility to administer them as a regular medicine for children all over the world and even be paid by the government itself. My son was the first American child to receive these medications but it opened the possibility to save thousands of children in the future. So that’s our story and Charlie Gard opened the eyes of the world on a horrible barbaric uncompassionate medical systems that UK practices. I couldn’t believe, as an American, that the UK, such a developed and forward moving country, has such a barbaric healthcare system. The sacrifice of Charlie Gard’s, Alfie Evans’ and many other’s lives was eye-opening to me. In the UK they do not value the life of the chronically and clinically ill babies, because it would be an economic burden to the medical system. And the same happens for the elderly sick people who are denied medical attention.
I appealed to the Prime Minister, to the Royal Family so that they could take compassion for Charlie Gard, but they ignored those calls. Not only from a father with a son with mitochondrial disease but also from many others all over the world. I am still very angry that the Royal Family ignored one of the most vulnerable and helpless citizens. How can they be a good Royal Family and ignore the most defenseless and helpless subjects that are babies and elderly people? That is not right and they can really do something good instead all of the circumstances of everyone lives and change the medical system in the name of Charlie Gard and all the other thousands of children that have died because of denial of medical care in UK. Children whose stories are unknown because the majority of them don’t reach the media. The doctors refused the responsibility of care about these children. I mean, even if there is a small chance that they live, at least try! If you can try, try! Don’t say only that they have to die.
I’m not a doctor but the doctors that I know, Dr. Hirano and the other doctors who are specialists, said that there was a good possibility to save his life, that he could be stronger like my son, and he could have got stronger little by little. I’m just a father of a sick child but I really believe that, if they saved my son’s life with a similar disease and these doctors had a medical plan to save Charlie’s life, why do not give him an opportunity? Why going in courts and fight to make sure that he dies? That’s why I call it “medical murder”.
Many claim that the therapy administered would have been a sort of therapeutic fury against the child, because they don’t know the nature of the therapy, can you explain in what the clinical plan consisted and which could be the possible collateral effects?
The therapy is the same made on our son. There is a respiratory therapy that makes sure the lungs are clean and makes sure he doesn’t get an infection. For the mitochondrial disease, Hirano and his team suggested three compounds (for my son just two where used) which are shaken and put in the milk and they are supposed to make your bones and muscles grow. Side effects of this kind of therapy are not known yet because they are supposed to be natural medicines and not chemical. I tried to make all people see how happy my child was, even to Charlie’s doctors. I realize that this is a rare disease but I wanted them to see that this is not an invasive strategy. The doctors said that the therapy was onerous as a sad excuse to end his life. The hospital of Charlie Gard have never wanted to give him a chance and they lied to have him dead.
What would you tell to people who say: “abortion is the only way to avoid a child suffering from a diagnosed severe disease, it would be selfish to make him grow in suffering and alone since his/her parents won’t be able to take care of the child till his life’s end”?
I believe that abortion is murder and it is never ok to have an abortion. The doctors who believe that they could predict what the future will bring are mistaken. My son was told that he wouldn’t make it and next year, in February he’s gonna be eight years old. And even if he’s weak and has his difficulties, he’s a human being created by God. No one has the right to kill him. No one. I have a niece who has spina bifida and they told my sister and my brother in law that they should terminate her life, they refused and now she is a beautiful young lady, she walks – with difficulty – but she walks! And she started college last week. Why should we try to create perfect human beings? No one is perfect, you have mistakes, I have mistakes, everyone has mistakes. God didn’t create us to be perfect, God created us out of his love, with imperfections or with diseases and that’s why human beings have brains to try to fix those diseases. Even if there are difficulties, the important is the soul. If there is life there is an opportunity for greatness. One should never be killed. The opportunity for greatness should never be stopped. My son is a bright little boy and he is our life and our joy. If we had ended his life we would have ended ours.We had to confront a lot of difficulties, we had to sell our house in Miami, my wife stopped working, but if you put your faith in God, if you ask God to help you, everything works. Everything is in his control. Sometimes we try to control things but you have just to listen and He will guide you. We found a great new place in Baltimore and we are happy just because we have each other and that’s what we need. Some situations are overwhelming and then many parents listen to the doctors that say “it’s ok, let your son die” and they have not the force to oppose. But I say “no, if he’s fighting, we will be fighting with him”. And I think that the majority of parents want their children to live and try everything in their power to save them. That’s what Olga and I have done.
What do you expect from our group of young university students for life? How can we improve in giving a message of hope and life in a world almost conquered from an ideology of death?
I expect you to be together in a unified way with Chapters and Groups ALL Over the World. It is much easier to be connected in today’s Social Media Reality so there could be a high profile Pro-life case, let’s say, in Italy. Then your group could ask all of the other Young Members of the various Pro-Life Groups to write op-ed pieces in the Newspaper, hold vigils, hold prayer services, initiate letters of support to the President of the Country as well as the Local Political Leaders ALL Over the World. I believe that level of support from Young Pro-Life Leaders around the World would have a tremendous impact and pressure on the Governments not to kill whomever may be in danger. United the Young Pro-Life Leaders Movement is a Powerful Movement.
Thank you very much Arthur for your precious witness, always together to fight!
Date of interview: 09/09/2018