top of page
Search
  • Writer's pictureCF Vests Worldwide

CF Vests Worldwide Heroes - Cystic Fibrosis patient in Thailand

Updated: Nov 18, 2023




My name is Joshua Bauder, I am the Vice President of CF Vests Worldwide. This is the story of my family and my daughter Evangeleen’s battle with CF.





I came to Thailand in January of 2013, and soon after I met Chitlada. We began dating and tried to see where we fit in in Thailand. We were really unsure if we were “the one” for each other, so we decided to put it in God's Hands. We decided to fast from each other and pray and see if God would let us know if we were “the one” for each other. We deleted all of our communicating apps and each other’s phone numbers and didn't contact each other for 2 weeks, all while doing a 3-day water fast and a 11-day Daniel fast (fruits and vegetables). We decided that if it was the Lord's will that we would meet at a certain place at a certain time and have only a 10 minute window to show up. If we were late or one of us didn't show up, then it was obviously clear that it wasn't meant to be. But by the grace of God we both showed up in that 10 minute window and we're soon married.


As we started our married life, we wanted to know what our purpose in life was together. We realized quickly that it wasn't about us; our lives are supposed to be about others. We quickly found a spot to serve children. We were attempting to start a boys and girls club-like hangout for kids in a slum in Bangkok. In the slum we were teaching math, English, Ukulele, songs and Bible verses. We did anything fun we could think of with the kids there. We felt like we were making an impact on the little kids’ lives, but then they would go home and their lives wouldn't change. In this slum it was as bad as it gets: it was filled with drugs, alcohol, prostitution, abuse and just about anything that you could think of.





Our refuge we had created for these kids was only temporary. When they went home they were still subject to the same ill-treatment, neglect, and peer pressure that is normal in the slums. We realized we needed to find another way to impact these kids, so we started the scholarship program. We started with 2 kids, Nut and Preaw, 13 and 14 years old. The idea was to get them out of the slum and let them experience nature, where they could be free from the dysfunctional environment that was causing them much trauma. We sent them to a school in Chiang Mai, Thailand, which is a 12-hour drive from Bangkok and is situated nicely in the mountains.


They were at that school 6 months when Preaw tried to commit suicide. We didn't know it, but she had been on meth until the day we sent her to school. She decided not to do meth while she was at school and the withdrawal was extremely difficult for her. We went up to the school to see her in the hospital, and when we got there she had tubes sticking out of her mouth and nose and we had no idea what to do. So we prayed. As we prayed the parable of the lost sheep kept coming to our mind – that we were to leave the 99 that we were serving in Bangkok and go and take care of the one, Preaw. So we did.


We left our jobs and ministry and found a house close to the school. She couldn't go back to the school so we had to homeschool her. We became brand new parents to a 14 year old suicidal girl. It was pretty crazy. So many things happened in our first year as parents that were not easy, but God worked it out and we became great parents, in my opinion. Soon after that our sheep multiplied and we were raising 6 kids. This year one of those kids graduates from college, two from high school, and one enters his senior year. Preaw ended up getting her GED and then getting her CAN (nursing assistant) certification.





After having all these kids for some time and we were finally living in the country, we decided to have our own child. That's when we were blessed with Evangeleen. February 8th, 2019 she was born on a Friday afternoon. After she was born the doctor called me in. I got scared. I knew something was wrong. The doctor sat me down and told me something was wrong. He said it was hip displyasia, and she would have to be in a brace for the 1st 6 months of her life. This was a relief because we could deal with a brace. If he would of told me she had CF then, I don’t think I would have been able to handle it. I don’t think that I would have taken it well knowing that this amazing little girl that I had been holding was on a fast track to death.


The first few months of her life were pretty uneventful. She was growing and nothing was wrong. But after the third month we knew something was wrong and we couldn't figure out what. She started coughing, but Chiang Mai has one of the worst smoke seasons in the world and it was our first year there so we had no idea. All of the doctors kept telling us that it was nothing not to worry about, that it was just the smoke. We would go to the doctors 2 or 3 times a month trying to figure out what was wrong and they kept saying not to worry about it. They would do x-rays, they would do allergy tests, they did tuberculosis tests, they checked everything they could think to check but couldn't figure it out. This went on for a whole other year.


Around Christmas of 2020 I got a hold of my father. We hadn't talked in a few years and I was surprised to be able to get a hold of him as we usually didn’t know where he was. I asked him if anyone in his family had a breathing disorder like right middle lobe disease, COPD or asthma. He said no. Then out of nowhere in his drunkenness he said, “I did have an uncle with CF, but I didn't really know this Uncle though.”





So I started to look into CF and I read about the saltiness of the skin and that the best way to check for CF is to lick your child. So I did. It was like licking salt out of my Palm. Just to make sure I decided to lick myself but I didn't taste like salt, so I called my wife over and licked her but she didn't taste like salt either. That was when I knew something was wrong. Before I was able to get a diagnosis my father passed away in April ‘21. He died all alone because of his love love of alcohol. After his death I was able to talk to his family for just about the 1st time in my life, and I asked his sisters if they had an uncle with CF and they all said no.


After licking her it made me start fighting to get her tested for CF. The doctors kept telling me, “No, she doesn't have CF. She's Asian; Asians don't have CF.” They kept telling me it was an allergy or something else they couldn't find, but to rest assured that it wasn't CF. Well, after arguing and fighting with 10 or 12 doctors we finally found a doctor that would take it seriously. As soon as this doctor saw Evangeleen she admitted her into the hospital, and after 5 days in the hospital she finally had the courage to tell us that she thought Evangeleen was going to die! This was a shock, to say the least! We had never had a baby before; we had no idea what to look for or how to tell that she wasn't doing well. We knew something was wrong but we had no idea that she was so close to death. When we look back it's easy to see! When we look at pictures and videos she looks like a skeleton with a head. We had no idea what we were doing and as we tried to find help no one could, or would, help us. We tried so hard to find help but no one thought that anything was wrong!





When I see her pictures I wonder how the doctors were so blind. Those doctors deal with healthy kids all the time and I just can’t imagine how they thought she was healthy. We ended up fighting with the doctor who ultimately saved Evangeleen's life because we wanted to get her tested for cystic fibrosis and she kept insisting that we were wasting our money and that it was impossible for her to have it. We could only find one place in Thailand to get tested and it happened to be the most expensive hospital in the country. We had to pay $300 to get her tested, which is the monthly salary of an average Thai person, and make a 12 hour drive to Bangkok. We later found out that there was another place to get tested, but you have to be referred by a doctor and it's in Bangkok as well. It takes about 24 hours to drive from the top of Thailand to the bottom, so if you were to have CF in either one of those places it takes you 12 hours to get to a place to get tested. Finding a doctor who would refer you and getting your state medical insurance transferred to that hospital is the hard part.


In 2022 there were only 10 cystic fibrosis sweat tests given for a population of 72 million people.


We paid and our sweat test results came back in at 81. Then we got genetic testing on Evangeleen and she had an F508 delta as well as 273 + 1G >A. This confirmed that she had CF. This doctor was able to refer us to our current doctor, Dr. Haruthai Kamalaporn. She is a pediatric pulmonologist who studied at a children’s hospital in Canada and learned about CF there. She only works in government hospitals, so we had to go there and see what state care is like. It is not good. After that Evangeleen was in the hospital every 2 to 3 months, which was hard on us as parents, especially as we had 6-13 other kids during that time. It was hard on us as parents, but it was even harder on us as a family. The stress of almost losing a child and the stress that comes with dealing with chronic illness wore on both my wife and I.


We had no idea that this kind of life existed, a life that relies on medicines, hospitals and doctors to stay alive! We had no idea that people live like this and we had never lived like this before. It was a shock! Trying to learn what this life consisted of was a hard lesson that had a lot of stress, a lot of pain, and a lot of responding to people in negative ways.





We thought that the care in Thailand was what was holding our daughter back and keeping her in a constant state of sickness. We thought she was getting sick because Thailand was dirty, hot, humid, and had mold growing everywhere, but it turned out that it was just the severity of her CF or the bacteria she had acquired. She was losing her lungs and she was losing them much faster than we were ready for. We had accepted that she had CF but we hadn't accepted that she was going to die, and it looked like it was going to be soon.


We started booking tickets back to America and made plans to get her in a CF clinic. The clinic that I called initially had given me a bad feeling. They weren't that nice and because of covid, they told us that we had to wait 10 days before she could go to the hospital. We had to book tickets as fast as we could because we knew that she was in trouble.


We had been doing suction 4 times a day for about a year hoping that we could make it work in Thailand – but it just wasn’t working. Suction is the absolute worst thing! It feels like you're waterboarding your child and that’s a terrible feeling. Your child has a look in their eyes like they're going to die and the natural stress response of a parent is to fight off whatever is giving her those eyes. But it's you that is doing it! A parent should never have to feel like they are hurting their child to save their child.





This schedule of treatment was unbearable. It was suction every 6 hours, 6 a.m.,12 p.m., 6 p.m. 12 a.m. That was our life! Suction all the time! Between her suctions we were spending 1.5-2 hours on her breathing treatments, which was h*** and Evangeleen let us know how much she hated it every time after suction was through. She would scream and there was no consoling her. We couldn't blame her though, we would do the same if we were her. But we just cried and tried to hide it from her.


It wasn’t much of a life. We were in Phuket, Thailand, which is one of the most beautiful places in the world. There are the most amazing white sand beaches I had ever seen and they were empty because they had shut down the country due to COVID, but we didn’t get much time to enjoy them.


We dealt with that for a whole year before we just couldn't take it anymore. It wasn't working. We were doing everything that we could find to do and everything the doctors were telling us to do and she was still sick. She was in the hospital for 2 weeks, out of the hospital for 2 weeks, then we would start hearing stuff in her lungs so it was back to the hospital again… this cycle kept happening, over and over.


We also didn't want to do too much damage to her lungs, so finally we decided to fly back to America.





I ended up calling Kathy Jones, who was the mother of CFer Natalie Dean, youtube channel. Before I had left America originally to go to Thailand, I officiated Natalie’s funeral, in January 2014. It was my first time and only time as a celebrant.


I found out days before we left Phuket, that Natalie had died because of Cystic Fibrosis. Before & after her funeral I had been told that she died of CF, but I had no idea what Cystic Fibrosis meant; it was just another word, like fibromyalgia or leukemia; it just seemed like a bunch of letters crammed together to form something really bad that I had no reality of. So when I had heard it, I just brushed it off because I had no idea what it was, but I knew that it was bad. As I was getting ready to do her funeral I was able to get to know her through her YouTube channel and her blogs. She seemed like like a cool girl, like a girl that I would have loved to get to know at the time, but CF had taken her away too soon and left a hole in her family and friends’ hearts.


When I talked to Kathy she suggested that I go to a different clinic than the one I had contacted, and instead go to one in my hometown. I didn't think I would listen to her and switch clinics because I had read that the CF clinic that I was taking her to was one of the best in the world and that's where I wanted my daughter to go, to the best!


Soon after Evangeleen and I went to the states and she was immediately admitted to the hospital. She had she lost 5 lbs and was throwing up non-stop because she was dehydrated on the plane. She slept the whole 18 hour flight and then was admitted for 8 days.


While in the hospital I was put in contact with Jon Brock, a CFer from Michigan. He had started Trikafta and was doing so well they decided to remove his port. When they did the surgery he ended up dying on the table and was resuscitated, but spent 3 more months in the hospital. This meant he had 3 months of unused Trikafta that they sent to his house while he was in the hospital, and he was willing to give it to me if I could get our doctor to agree to give it to Evangeleen who was 2 yrs old at the time. This was July 2021 and Trikafta was only approved for 18 and up.





Getting the doctor to agree was much harder than it sounds. Our clinic had assumed the same thing I assumed, that her severe CF was caused by poor care in Thailand. We all soon found out that wasn’t the case. Evangeleen and I arrived in the US in April and we were putting off admitting her for her first round of antibiotics until my wife was able to get her green card and join us. Chitlada arrived in the beginning of July, and then my wife and Evangeleen spent that whole month in the hospital while I worked to remodel our house and make it liveable.


She was released at the beginning of August, and by the last week of August the doctor and I agreed that she needed to be admitted again. I was so tired of this cycle and asked the doctor what is the plan? Her plan seemed to be the same plan as our Thai doctor’s plan, and it wasn’t working. I was tired of hospital stay after hospital stay and Evangeleen was tired of needle after needle, 1 month in and one month out. I was getting scared and wondering how much of this her little liver could take.


The doctor started pushing for a lobectomy (partial lung removal surgery) and I was completely against it. We had tried to get her into clinical trials for Trikafta but it just wasn’t working, and the doctor couldn’t find a way to be able to get her on the drug. I was just blown away that they were willing to cut her lung out before they were willing to put her on Trikafta.


So, I asked the doctor, “Say I am the worst parent in the world and I put her on Trikafta without your consent, what do I have to worry about? CPS? Police? DEA? Will I lose your help?


She said, “Give me a few days and I will get back to you.”





A few days passed and she called and told me if I can get the drug, then the clinic could help me. I was super stoked! Blown away! So I rented a car and drove to Michigan.


I went and met John Brock and he was the most amazing man I had ever met! We had lunch and talked about everything; we shared our stories and became instant friends. He was willing to risk his freedom to help my daughter, and anyone who would do that instantly becomes my hero! Sadly, John Brock passed in 2022.





I left Michigan and was driving back when I was pulled over and arrested for possession of illegal drugs in Indiana. Before the police officer arrested me we spent 2 hours in the front of the car talking; he was trying to get me to tell him where the drugs were. I was not going to lie to him and was waiting for him to ask the right question. He finally asked if I had prescription drugs in my car and I told him that I did. I told him where they were and he went and looked and came back with them. The officer told me I had enough Trikafta to put me away for 8-10 years. He mirandized me, cuffed me and put me in the back of the car, while they tore my car apart looking for more contraband. I started to pray. He started to google to see what Trikafta was. Much to his displeasure Trikafta is not a scheduled drug; he could arrest me but it would probably be thrown out in court after I did a few weeks in the slammer. I learned that day that non-scheduled drugs are unarrestable.


He had pity on me and told me he had a daughter himself… he ended up letting me go after he berated me a bit for being so reckless.


3 days after that we started her on a 1/3 of an adult dose and it worked amazingly. We have had no side effects and have had no hospitalizations in almost 2 years. Her lungs are great, her liver is great, and she just keeps growing. We are going on 3 months now without an infection. The great thing about Trikafta is it makes Ciprofloxacin actually work! It had never had an effect on her before and now it works every time!


Watch our story here!






74 views

Kommentare


bottom of page