FEATURED FAMILIES
My husband and I were just 20 years old when we got married. My husband Paulo earned a degree in Agricultural Engineering. He was pursuing his dream of managing his family estate. I was pursuing my degree in special education. Being high school sweethearts, it seemed that our lives were complete. We grew up in privileged families in Brazil so our futures were set.
On August 16, 1980, I gave birth to a healthy boy, Gabriel, and life was so beautiful. Two weeks later, my baby showed some irritability and his appetite deteriorated. My mom was the first one to notice something strange; he was having convulsions. We rushed to a hospital. A great doctor in Rio de Janeiro, Dr. Pedro Solberg, came and diagnosed him with MSUD. A week later, we lost a part of us, our baby died.
At that time, my understanding of this disease was very limited. We knew that children with MSUD need a special diet. We had no idea about what the treatment would entail.
Months later, I found out I was pregnant again. This time I went to Boston to have an amniocentesis done by Dr. Vivian Shih. Because of my difficulty with the language at the time, I had to always ask people to talk to the doctors for me. Three months later, we found out this baby had MSUD too. That is when our lives changed completely.
Dr. Vivian Shih told us to contact Dr. Selma Snyderman in New York. Talking to Dr. Snyderman, we found out that we would have to come to New York. She was afraid that in Brazil they would not be able to administer the special formula. My husband was finishing his university studies, so my mother and I came to New York in July 1981.
Bernardo was born August 27, 1981, a beautiful, healthy boy. He stayed in Bellevue hospital for three weeks. Some moments were very hard, but he did great. Afterwards, we stayed in New York until he was three months old. Then we went back to Brazil thinking we could handle the diet ourselves. However, in my country, we were not able to have the amino acid levels tested. Therefore, we had to send blood to the United States every time. This always took long and by the time we got the results, he would be hospitalized.
The way we monitored him was with DNPH. Therefore, my doctor in Rio thought it would be a good idea to go back to New York and learn more about MSUD, especially about Bernardo’s food. He was almost 11 months old, and he would just have vegetable soup. I guess that is why today he cannot stand to see soup in front of him. We went to the U.S., thinking of staying six months so we could learn everything. Then we could finally return to reside in Brazil to live our normal lives again.
The more we learned about MSUD, the more scared we became. So every year, we dreamed of the day we could go back to our home. However, year after year passed and talking to doctor Snyderman about the reality of Brazil made us stay. Bernardo was hospitalized a lot and every time was very difficult for us. We did not have the support of our family, and Paulo was always working. He was the wage-earner, so I was always alone. Seeing my son suffer so much was almost unbearable to me at times.
Years passed and Bernardo was doing great in school. I got pregnant again. This time I gave birth to a beautiful girl who we named Diane. She just stayed six days in the hospital. With this baby, I did not feel so overwhelmed since I had more experience with MSUD. Diane was a fighter since she was a tiny baby. She had some complications as an infant, but is doing great now. School was always a hassle for her, but she is very determined and always gives her best.
My kids had a lot of problems when they were young with behavior issues that we did not know were MSUD related. Now reading the e-mails from parents with young kids in the Support Group, it is so clear to me. I can see the blessing this group is to those in it. Most of my friends did not understand my children at all. The more people can be educated about any condition, the better it will be for everyone.
We have one more child, Felipe. He does not have MSUD. Felipe is a great child, but it is hard for him to understand why: when things happen to his siblings health-wise, we jump, and with him, we are more relaxed. He loves everything I cook for his brother and sister.
A lot happened to us these last few years. I must mention that during the most important and difficult times we have had, you MSUD families were a support to us. My husband has a degree in engineering, but in New York he was obligated to grab any position to support our family. So he started working as a waiter in Staten Island in a local restaurant.
After years of very hard work, in 1996, he arrived in Windows on the World, one of the most famous and beautiful places we ever saw. There Paulo found his future for the first time in the restaurant business. Soon he was promoted to captain, and then, after that, he became a Sommelier. Windows became a family to him and to us. Windows was the first place where Paulo felt comfortable working in a job that was outside of his field of study. Bernardo worked there, too, as a steward in the wine cellar. Our family enjoyed so many great times, so many celebrations. Certainly the greatest feeling is when our kids who have such a strict diet can enjoy great food made by an unbelievable chef like Michael Lomonaco. The food was made with love for them. The view from the restaurant was something “out of this world.” We were there in May, 2001 with my mother and family.
The day of the attack on the World Trade Center, we did not know what was going on. Paulo always left at 7:30 a.m. to take the kids to school and then go directly to work. However, THAT TUESDAY was Felipe’s birthday. So my husband stayed home to have lunch with him. The phone would not stop ringing. When I answered, I heard my friend crying hysterically, asking me where Paulo was. That is when we knew something horrible must have happened. We turned on our TV, and we could not believe it. Paulo’s building was the first one to be hit.
Paulo immediately tried to call his friends, but already none of the phone lines were working. There were 80 people working at Windows that morning. The day before, the manager asked Paulo if he could come to work on the breakfast, because they needed help. And Paulo said no. He never said no before, because we always needed extra money. Our whole family, even today yet, prays at mass to thank God for saving my husband that day. My husband’s friends have been coming to visit, and that is all we talk about. It’s a way of dealing with all the feelings inside us. Windows will always be in our memory, as the top of the world. I would like to take this opportunity to thank you again for all the help and support the MSUD group gave to us.
I would not want to finish this without talking a little about Dr. Morton. We attended the last MSUD Symposium (2000). For us, it was the first time, and for me it was very important. For the first time, I was able to understand millions of things about this disease that before were completely incomprehensible to a layman like me. Dr. Morton was able to take away many fears that have been inside of me. I learned all the new ways of treatment. After living through so much as a mother of two children with classic MSUD, I have also come to the realization that their mental health and well-being is so critical to their physical health. Certainly, as parents we cannot treat our kids medically, but we know them better than anyone. I always promise my children that I would do anything within my power to minimize their pain, and that some day their treatment would be less overwhelming and traumatic.
We’ll always be grateful for everything Dr. Snyderman and her colleague Dr. Sansaricq did for us, and we only hope that all the metabolic specialists will work together to help the children cope with their illness. Now my kids are in the care of Dr. Morton, and they are doing really well. Bernardo is now 20 and in his junior year at Fairleigh Dickinson University. He is majoring in film-making. He was an honor student last semester. Diane is 15 and finishing junior high. Felipe is 11 years old and just started the sixth grade.
In closing, I realize how blessed my children are to receive adequate treatment that gives them the opportunity to lead a normal life. I will always be grateful for all those who helped my children grow up to be two amazing and incredible people.
God Bless you All!
Love Always, Ruth Villela
It was a beautiful morning September 6, 1996 when Jeremiah Daniel Ellsberry was born. He weighed 7 lbs. 11 oz.—all boy. Everything went well. He was treated for low blood sugar and discharged three days later. About the fourth day, we noticed he didn’t want to drink from my breast, so I gave him formula in a bottle. It only worked for a while. That day he had his first checkup and the doctor just gave me medicine to wet his eye ducts, said he had colic, and sent us home.
By now I was concerned because Jeremiah wouldn’t stop crying. So we decided to take him to the emergency room. We were treated as if we were “overreacting parents with a firstborn.” At that time, I had two daughters (Frances 17 and Vanessa 14) and my husband had one son (CJ 6). So we weren’t first-time parents. In the ER, several tests were done including a urine test. It was hard to complete the tests, including one for ketones, because Jeremiah was not able to take in any liquids. The hospital sent us home saying it was only colic.
In the next 24 hours, he only took 2 oz. of formula. Then I knew something was wrong. He kicked and cried most of the fifth day. That evening we debated about taking him back to the emergency room because of how they made us feel doing during our first visit. We wanted to make sure we were not overreacting. We decided our son Jeremiah means more to us than what the hospital thinks of us. So off to the emergency room one more time.
A spinal test taken in the ER came back negative. Thank God! So what was the problem? While we sat and waited for other test results, our son was having screaming spells every so many minutes and would sleep between these episodes. Later we learned they were seizures. We told the doctors we were not taking Jeremiah home until they could find out what was wrong with our son. Because we had HMO insurance, they had to have a reason to admit him. So we just stood there, waiting for help.
We started calling everyone from church and our families to put Jeremiah on the prayer chain. Everything seemed so unreal, like I was going to wake up from a bad dream. I started thinking about the Scripture that says He will not give us more than we can handle.
In the emergency room, there was a nurse who had been there the night before. She came in our room and asked what was going on. We explained, and she stood there watching Jeremiah for a couple of hours. We did not know her shift was over, but she was determined to find out what was wrong. I believe this was God’s doing again—God bless her. She saw the pattern of his outbursts and requested that he be admitted for more testing. By then it was the sixth day and nothing was happening. Jeremiah was deteriorating in front of us and there was nothing we could do but pray. We felt so helpless! This is the time we needed to trust in the Lord.
Our son looked as if he was resting peacefully. By this time, it seemed everyone from our church and family was there for support and prayer. When I remember this time, I thank God for that support. Having a strong foundation in the Lord helps. Amen.
The doctors could not find what was wrong. They asked us to make a choice between continuing with more tests or transporting him to Long Beach Children’s Hospital where they had specialists for babies. I shouted, “What are you waiting for!” While Jeremiah was being transported, he fell into a coma. That was real scary—a feeling that I could never describe, but this was reality.
When he arrived at the hospital, Jeremiah was put in intensive care with all the newborns. He was put in isolation because he had been taken home for a couple of days. I look at it as God giving him his own private room. Visitors were allowed in as long as they scrubbed up. So he could be prayed over and was anointed by our pastor and church leadership. Many others from all over the world were praying for Jeremiah, and we knew God had his hands upon our son.
Jeremiah looked so big in his incubator compared to all the other infants in ICU. We thought of what all the other parents were going through. It gave us an opportunity to minister and witness to them. Our friends and family came by during all hours of the day, bringing food or taking us out to get away for a while. We thank God for them. They kept us from going insane.
All I can remember of this time is the doctors asking us a lot of questions. It was on the tenth day, a special doctor (another of God’s angels) asked our daughters if they could recall anything different about their brother. They remembered that Jeremiah never smelled like a “fresh smelling baby,” even after a bath.
Then the doctor found Jeremiah’s ketones elevated and started treating him for MSUD, pumping him with calories. The doctors and nurses were moving fast. They needed our authorization to put a thin line in his chest, so the fluids could go in faster and not get clogged. That was a hard decision to make.
The doctors said this could be a long waiting period, and they didn’t know what to expect since he was the first child ever treated there for MSUD. First we had to wait for Jeremiah to come out of the coma, and then see how much damage he had sustained while in a coma. We tried not to lose hope, but it was still hard to hear those words.
We were alone one night in Jeremiah’s room, on our knees, praying to God. God put in our hearts that if He gave us our son, He could take him from us at anytime. We needed to accept this. We had so much peace after that. We started concentrating on going around doing God’s work and praying for the other children and their families. That kept us from being consumed by our own situation. Then we were able to use this time for God’s glory.
Now that we knew what our son had, what was MSUD? The name itself was funny. When the doctors explained the disease and how rare it was, it was a wake-up call. They gave us the worst outcome. He might not walk, and if he did walk, he would be a skinny kid who would not be strong enough to play sports. I remember looking at his dad’s face—speechless. I felt like I was on a roller-coaster ride. We were thankful we knew what was wrong and then had moments when we would fall apart wondering how are we going to take care of our son. We hung on daily to this Scripture (Philippians 4:13), “I can do all things through Christ who strengthens me.” Some days my husband would be the strong one, other days I would be the strong one. Then there were nights when we both would break down and cry out to God for strength to get through another night.
When Jeremiah opened his eyes and smiled again, we could not contain our joy. It was like our son was born all over again. We knew it would be a hard road ahead of us, but he was out of his coma and that’s all that mattered at that time. “Nothing is impossible with God” Luke 1:37. Amen.
We still spent every night in the hospital, until one day a sweet lady dressed as a nurse came to visit Jeremiah. She convinced us to go home for the night and promised to check in on our son during the night. She made us feel at peace about going home for the first time since our son was in the hospital. The next morning, we could not wait to see Jeremiah. We ran into that special nurse in another section of the hospital, and she told us our son was fine all night long. She gave us a pendant with a pair of footprints and a Scripture verse, Jeremiah 1:5, “Before I formed you in the womb, I knew you, before you were born I set you apart, I appointed you as a prophet to the nations.” She wanted to make sure I placed it in Jeremiah’s crib in the hospital. We looked for her later to thank her, and she was nowhere to be found. No one knew who she was. I believe she was another angel sent from God.
Our son was improving and getting stronger. He was fed through a gastric tube until he learned how to suck again. We had a lot of support from the hospital staff. It was a real scary thought that this hospital had never treated anyone with MSUD before, so we knew we had to do a lot of research on our own. I praise God for the MSUD Family Support Group. I remember reading about what happens when a baby is not diagnosed within 10 days. Like I said, God had His hand upon my son.
The hospital tried to prepare us to care for our son at home. Everyone who would be caring for him had to take CPR classes. After 30 days in the hospital, it was time to take our Jeremiah home. I was so scared. Could I take good care of all his needs? I knew I couldn’t go back to work right away and leave someone with this responsibility. At first his father prepared his formula every day until I was comfortable doing it myself.
Then came the weekly visits to the doctor’s office for drawing blood. The visits changed to every two weeks, then monthly. When Jeremiah was ill, he went straight to the hospital for a couple of days at a time. It was hard to see him go through all this.
Then I had to deal with my husband’s battling substance abuse. This started when our son was around six months old. It started with my husband being away for a day, then weeks, then for months at a time. It really took a toll on me and on my relationship with God. But I hung with His promises that He would never leave us or forsake us. I tried not to lean on my understanding, but on His. I eventually went back to work and had a good babysitter who I knew I could trust with my son. She was a wonderful blessing.
As time went on, my son was in and out of the hospital around three to four times a year. Last year, 2001, he was only in once; the last time in December. Jeremiah even went through a major ordeal when he was abducted by his father and was off his formula for four days in May 2001. He was found in good health, which was a miracle in itself. Doctors are still puzzled by the outcome. I know why nothing happened to him, even though he was in a very dangerous place. The Blood of the Lamb protected him. God even protected my family and church family while they went into the darkness to look for my son every day until he was found. God even used a drug dealer prostitute to turn my husband in. Prayers went to God from all over for our protection and safety. This trial just brought me closer to my Savior Jesus Christ. Amen. Because of this incident, the Lord has become my son’s fatherly image for right now. What better example of a father can he have? None!
Jeremiah enjoys playing baseball, and this year will play soccer. He will be starting kindergarten this September, so keep us in your prayers. He has been going to our church preschool since he was 18 months old, and they take good care of him.
I believe God has given my son a soft spirit towards people who are hurting or struggling in life. Jeremiah senses things in people and wants to pour love into them. He has been my inspiration to continue to live in spite of the struggles and obstacles in my life. We call him “Miah” for short. He loves hamburger Happy Meals from McDonald’s without the meat, cheese and corn. He loves to go dirt bike riding with the Dirt Dogs from church, and his favorite place to hang out is the skate park at church. He loves to go on our church’s outreaches. He encourages me to go also. He has been really blessed by the Godly men at our church who take him under their wings and spend time with him.
With the Grace of God, we have been able to get through this and will continue to stand firm in God’s Word. I treat my son’s disease as a challenge, and I don’t allow it to consume our lives. I continue to do all the things I dreamed I would do with my son. I try not to shelter Jeremiah from anything or anyone, and by the looks of him, I think he’s in good health. Thank you Lord.
I hope this article will minister and give hope to all who read it, because I give all the glory to God first. I also thank my family, church family, especially our pastors and their wives, who are not only my shepherds, but my friends. There are so many I didn’t mention who have been there for both Jeremiah and me through all of this and are still there. You know who you are, and may the Lord bless you all.
Love, Lucie Ellsberry
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