Bryan’s story

When my first son was born, Bryan, he was born with Marfan Syndrome. It was very complicated to see a doctor in my country at that time and he was 3 years old before he received a diagnoses. I was knocking doors… a lot of doors… I don’t know how many. Just looking for help for my son. He was getting taller and taller and thinner and thinner but he was amazingly smart. I’m not saying that because I’m the mother of Bryan; he was just a very special person. So I was knocking doors here in the capital of our country, Quito, and they told me, “Oh, Sandra, just go with your son to your house and wait for the end of your son because he’s going to pass away soon.” His heart condition was really bad… heart valves and lots of arrhythmias. He couldn’t see very well, and he started having issues with his column, I think it’s the same in English, the problem, called scoliosis. Severe scoliosis. But the biggest problem was his heart. He couldn’t even run a little bit. He was getting little purple in his lips.

I always say that you shouldn’t say, ‘I can’t do something’ and I was teaching to my son that. The thing is, I was knocking and knocking doors here in Quito and finally, one of the doctors here said in Portoviejo, there was a really nice foundation and they were helping children and some ‘gringo’ people, you know, from the USA, were coming over there to help children. At that time, Bryan was 5 years old. I sent all the x-rays, exams, and blood test to the San Lucas Foundation. I didn’t expect any answer, because Portoviejo is a little, little city here in my country and I’m living in the biggest city in our country. So it’s evening here in Quito, and I’m knocking doors, and Gino called me and said, “Is this Sandra? Because Mayo Clinic, through Hands for Humanity Foundation, chose your son to go to the Mayo Clinic.” But listen! Clinic, in my Spanish or Latin idea, clinic means a little, little place. I was like, okay, a clinic, it’s okay. Because it’s a little clinic in the USA, so it’ll be okay.

Then Gino said, “But you need to go in the next couple of weeks.” When I asked why we had to go so quickly, he told me, “Because your son, he can’t wait more. He really needs help right now. So that’s why they’re going to help you with a surgery, to replace the valves in his heart.” That was crazy, man, that was crazy. I didn’t expect the people in a little city in my country to open the door for me. You have no idea the feeling, at that time. I wanna start crying, right now.

So we were getting ready to leave and I asked Gino who was going to wait for me in the USA, in Miami, and he said, ‘Kate Welp.’ I said, ‘Okay, who is she?’ And he said, ‘No worries. You can recognize her. She’s very pretty. She’s very tall. And she’s very nice. She will be waiting for you and asking for you at the gate.’ I was very scared. And I was planning a Plan B in case Kate did not appear and how to get back home. But thank God, she was there and she asked, ‘Are you Sandra?’ I couldn’t even say yes at that time without getting embarrassed. We were waiting for our next flight and just looking at each other and smiling because it was impossible to talk to each other.

When we first got there to Minnesota, we stayed with Jennifer Lopez, one of the volunteers for Hands for Humanity over there. Their home was like our home! They were so kind, really nice with us. We weren’t able to talk to each other much but we were riding in the car and a song came on that we both knew! So were singing together and trying to talk to each other. We were waiting for a room in Ronald McDonald’s house. It was amazing how the people from Hands for Humanity were coming to visit us there, to help us go around the city, to go for lunch, to go to the park. Actually, I feel like they were family for us in Minnesota. They worried about us, asking us how we were feeling, giving us cards… it was amazing.

The first surgery, Bryan was in the hospital 15 days. They fixed the aortic valve. Imagine me waiting for 6 or 7 years in my country without a diagnosis and then it was so quick at the Mayo Clinic! They told us he would need another surgery for the mitral valve… but later. We came back home and he started having what do you call them… aneurism. The first aneurism was thoracic and the doctor… all the doctors were unbelievable. Back at Mayo Clinic, Dr. Bauer came to the room with my son and told Bryan he would need to never say ‘I can’t’ because after this surgery, very probably, but not for sure, maybe you’re going to have problems walking or problems with your kidneys or a very high problem with blood inside, in Spanish we say, hemorragia. All those problems you can face, but it’s your decision. Dr. Bauer, I remember his face, he was telling us that he himself was facing cancer and he was able to win the battle and Dr. Bauer said, “Bryan, if you are able to say ‘I can’, I’ll do the surgery for you.” And Bryan said, “Of course I can.” After that surgery, I remember Dr. Bauer saying, “Next time you come back, you shouldn’t need the hospital. You should be able to live for a long time.” But then Bryan’s back started causing him problems, his scoliosis. Dr. Stans, Tony, he was traveling over here to Ecuador and he said, “If Brian is strong enough for one more surgery, he needs help with his back.” So Kate did everything again, helping us, talking to the Sisters of St. Mary and doing all the paperwork to get us help. I couldn’t go that time because my son was just born, but Bryan traveled with his father to Mayo Clinic, again, and Bryan was able to have one more surgery in the United States. Thank God, Bryan came back here, to me, after all those dangerous surgeries.

It’s hard to explain to you how strong Bryan was. He was able to talk with his eyes. He was touching so many lives. He was inspiring so many people that needed heart surgery. They would see him and say if a little boy can do it, I can too. When he was back in school, he was helping other children to stay in school. He was so smart. When people felt weak, he would try to make them feel better. It’s hard for me, as a mother, to explain how special he was.

We were invited to Houston, TX for a Marfan Syndrome conference, and Bryan was able to see other people like him for the first time. While we were there, they did some routine exams, and they found another aneurism, this time in his abdomen, that was 8 cm big. We were so happy to meet so many people and to see how they were handling their problems. We met people with worse problems than Bryan. There was just a lot of information for me, as a mother, to help my mother. The doctors told me that one more surgery was necessary for my son as soon as possible… again! The doctor said, ‘I want to introduce myself. I am from Minnesota.’ ( Dr Heidi Connolly) I immediately started crying because I was writing to her all those years and now when I needed her the most, she was here, in Houston! She told me that we couldn’t move, that it was necessary to stay in the United States and go to Minnesota and get the surgery. We have only enough money for five days and now are told we should not go home. Once again, Kate was busy back in Minnesota quickly trying to do the paperwork to get us to the Mayo Clinic.

Once again, Dr. Bauer said, ‘The last surgery was hard but this one will be harder.’ Bryan was so strong. He said yes. Before Dr. Bauer left the room, he said, ‘See you soon. You’ll be asleep for a few days after the surgery, so see you next week.’ And Bryan said, ‘See you Wednesday.’ Unbelievably, it was Wednesday when he woke up, but three months later. I remember one of the volunteers, she was coming to the Mayo Clinic to visit us on that day, three months later, and she said, ‘Sandra, don’t you want to come with me, to watch a movie? Today is the premiere of the movie! The movie was Eat, Pray, Love.’ But I said, ‘Not today, because today is Wednesday.’ I had the sensation that today, Bryan was going to move his feet. She said, ‘Sandra, you’re crazy. The last three months he’s just laid there. Let’s just go for a couple hours. You need to go out of the hospital.’ But I said no. He was in the ICU with all those tubes, in a coma, and ten minutes after she left, he started moving his feet.

While we were in the Ronald McDonald house during that last surgery, I met a lot of people. Lots from Guatemala, Mexico. They were very poor and couldn’t speak English. They couldn’t even go to McDonald’s to ask for a hamburger, even though in Ronald McDonald house they give us little tickets to ask for food for free in McDonalds. I remember the first time I came to Ronald McDonald house. There were people in the main room all talking English. People from Italy, Japan, all over, and all speaking English and I would wait until they would go back to their bedrooms so I could ask for a glass of milk. I ended up walking to HyVee for 2 months to buy milk because I didn’t know how to ask for it. I remember all this and that’s why I started teaching English to others. Can you believe it? With my English… teaching English!

After that long surgery, after that long time in the USA, Bryan already had finished his high school so he went to the university. He was studying to be a psychiatrist. He was 20 years old and he was starting to have really bad pain in his back. He was studying for his last exam in his last year of the university and he started screaming in the middle of the night because of the pain. I think, my theory is, one of the hooks from the scoliosis surgery, maybe one of the hooks moved or something. I decided to go with my son to one of the clinics close to my house, just for pain killers. They overdose him. They gave him lot of Tramadol and they cause respiratory… respiratory depression. And that night, my son pass away. Just from a fucking overdose from Tramadol. Can you believe that? How ironic is life! After all that! He was always so strong. He was always able to walk, to do things by himself. He would stand up and go for his dreams. He was always able to help me when I was sad inside. He was like… I don’t know how to say it… my son, my friend, you know? My everything.

When I was thinking, what was Bryan for me? In a real concept, I think he was my project of life. Two months after my son passed away, I remember Dr. Tony Stans coming here to Ecuador to help children again and we were crying together. Dr. Bauer and some doctors from Mayo Clinic wrote to me. I know there’s no one that can replace my son. After Bryan passed away, I get a divorce with my husband because the only reason to be together was Bryan, to be honest. So now my life is my other son, Ariel, and Max, my dog and Ariel is amazing and I don’t want to make him feel bad, but Bryan is impossible to place. Now I have my own English school, teaching kids English, because if you know English, you have so much more opportunities. I have my own method to teach, called Bryan’s Method. And Hands for Humanity, has a sponsor, like to send people to school, and the name of that sponsor is Bryan Betancourt Scholarship Program. I decided to join Kate’s volunteers, because I thought at that time and I still feel that way, that it’s the only way I can say thank you for all the things Kate did for me and my son. I’ve been able to meet so many friends. And now I understand how good it is for you that if you have a little, little bit more than others… that little, little bit is necessary for someone else and if you’re able to share that with all your heart? That’s good enough, that’s good enough.”