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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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The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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