June 12th - Baby Cyrus Update (from Marissa)

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June 12th - Baby Cyrus Health Update (from Marissa)

June 12th, 2022 | by Marissa Anderson

We’ve been getting a lot of messages from friends and supporters, asking for a health update on baby Cyrus, so I thought we’d update everyone at once.

This is going to be a very raw and vulnerable post, but I feel it is important as our family can use a lot of prayer for our son.

Back in April, Cyrus was diagnosed with Cyclic Vomiting Syndrome (CVS) by our family doctor and a GI doctor. Cyclic Vomiting Syndrome is a series of vomiting episodes and severe migraine that recur in a predictable pattern. Cyrus would be in an episode for several days, then he’d be 100% well for a few days, then get sick on the 4th day, lasting for several days. This repeated pattern is one that couldn’t be broken even with medications that were prescribed (which made things worse), but Craniosacral therapy seemed to help shorten the days he was sick. He still got sick on every 4th day, but the Craniosacral therapy made it less severe. His doctors believed this to be a genetic issue, and something we can’t cure, but only ease the symptoms and hope he grows out of it. During his CPS case, the doctors told the social workers that this was completely medical, the parents did nothing to neglect or abuse Cyrus and that there is no reason for CPS to be involved, but they continued to pursue the case—in spite of knowing that information.

Once the case was finally dismissed and our family relocated, we started researching more on Cyrus’ condition, and looking for doctors who are familiar with it. We know WHAT he has, but we don’t know WHY it is happening, or what the root cause is. The days that he’s in his vomiting episodes are incredibly difficult and hands on for the entire family. Everyone, (many times including his grandparents, aunts and uncles), will drop everything to help care for him and make him as comfortable as we can. But during his days of being well, it’s like he’s never even been sick before. He gains weight so fast, eats anything he can get his hands on, has so much energy and is the happiest little baby you’ll ever see.

We were referred to an amazing doctor who spotted an abnormality in his lab tests and pointed to the possibility of a Mitochondrial Disease. He believes Cyrus can have a possible mitochondrial defect, which would explain why his symptoms started so suddenly when he had zero signs of health complications from birth and in the first several months of his life.

After diving into the research on this disease, I found a study which concluded that 88% of people with Cyclic Vomiting Syndrome have serious mitochondrial defects. The mitochondria are like little batteries for the body. They take food and oxygen and convert them into energy that the body needs to operate. When mitochondria cannot convert food and oxygen into life-sustaining energy, cell injury and even cell death follow. When this process is repeated throughout the body, organ systems begin to fail and even stop functioning.

Mitochondria exist in every cell of the body, and oftentimes when just very few mitochondria have defects, symptoms show way later in life, if at all. The earlier in life that symptoms manifest, the higher load of defected mitochondria there are. The bigger organs in the body contain more mitochondria, so often get affected first. For Cyrus, it seems to be primarily neurological and gastrointestinal.

This disease is not something widely understood by the medical field and the research on it is not as broad as most other diseases, but we have been researching everything there is to know on the matter.

Doctors have concluded that there is no cure, and in children with this disease (especially babies), they rarely survive past childhood.

We don’t have an official diagnosis. Even if he is diagnosed with mitochondrial disease, maybe it will be a less severe case. Our current doctor has ordered more tests, including genetic testing to try and see exactly if and which mitochondria can be defective, and how.

We don’t believe that our answers will come from traditional western medicine or the allopathic method of care. During two inpatient hospital stays at St. Luke’s Hospital, that were both about 4 days long, they were never able to diagnose anything or give us any answers. However, our family doctor (who offers direct primary care) gave him his first diagnoses of Cyclic Vomiting Syndrome on his first appointment, a diagnosis which another MD and Nurse Practitioner later agreed upon. Our new doctor was able to suggest we look further into mitochondrial defects and put him on these amazingly helpful supplements, also on the first appointment. Traditional allopathic hospitals have given us no help, only further confirming our already existing beliefs and knowledge on that. As most of you know, we had no choice on that last hospital stay for Cyrus.

Although we’re glad to possibly be finding answers, learning all of this information has been incredibly disheartening. Even the slight possibility of our child having a life threatening disease with no known cure, is something you never think can happen to you. We are praying for God to lead us to the answers Cyrus needs, to know exactly what it is and to find a cure or a way to thrive with this. We have prayed for guidance to find the right doctors and the right information during our research.

We pray often for miraculous healing. I told my husband that if a miracle is how Cyrus will receive healing, then it doesn’t matter how severe or hopeless the diagnosis is, because nothing is too big for God, and nothing is out of His scope of power.

My husband anoints Cyrus with oil and we pray healing over him every night, and there is constant prayer throughout the day. Maybe God has a much bigger plan through this that we can’t even see right now? Maybe this will just be a difficult journey that builds our faith and teaches us to depend on God completely. When the world tells you there is no hope, as Christians, we know there is always hope through Christ, and it is in situations like this that we have nowhere else to turn.

God has brought us this far and we know He will never leave nor forsake us.

There is some good news and hope, though. After finding all of this information out, we prayed for direction, peace and a sign of hope. Our current doctor had Cyrus start on a combination of natural supplements that help support mitochondrial function, and after taking them for a day, he went into another episode the next day—on day 4, like he always does. We were pretty discouraged, but that evening, we saw a beautiful rainbow over our house. Gods sign of hope. I remember seeing a huge rainbow the day before we got Cyrus back from CPS. We felt a boost of encouragement and that night, Cyrus’ vomiting episode ended. In less than 12 hours. His shortest episode yet. Wow. This was the boost of encouragement we needed. Cyrus had so much energy and was so happy! He hasn’t been on this supplement for very long, but we’re hoping to see a change in his episodes moving forward! God has always given us hope right before a breaking point. He knows how much we can handle. What an amazing God we serve.

In conclusion, we are waiting to finish some more testing for Cyrus to see if there is a possible diagnosis, we will continue with the supplements he is on as we research more treatments and get connected with doctors who are experts in this area, and we are watching Cyrus gain weight very well. He’s growing and enjoying his days when he’s healthy and we are just spending as much time as possible with him as a family, building memories and soaking up every precious moment we have with him. Life is so precious and we want to treasure and enjoy it to the fullest. My Dad always tells us that the only thing we take with us to heaven is our memories, so to invest into making good ones.

There is a lot of information we learned in the hours of research (I’ve been staying awake through most nights, reading through doctors studies, articles, scientific studies, reading through Cyrus’ lab results and everything I can find on the matter), and it is too much to share the full explanation of his symptoms and everything we’ve learned, but if anyone has any experience with this diagnosis, symptoms, treatments, or know of good doctors, please let me know. We are open ears to learn everything there is to know and would appreciate any information you might have. We are willing to do anything and everything it takes to help our son. No matter the scope, no matter what it costs or what sacrifices we have to make to get him what he needs, we will do it in a heartbeat.

Thank you to everyone who took the time to read this all the way through. We have so much gratitude for all of you who have stuck with our family and continue to support us.

We ask for your prayers for our son and for our family as we navigate lots of life changes. For those who have asked what specifically they can pray for, prayers for strength, wisdom, guidance, peace, hope and emotional bandwidth are so needed and appreciated!

We love all of you as family!

Marissa Anderson
(Baby Cyrus’s mom)

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Isaiah 44:28 "That saith of Cyrus, He is my shepherd, and shall perform all my pleasure."

Isaiah 45:1-3 "Thus saith the LORD to his anointed, to Cyrus, whose right hand I have holden, to subdue nations before him; and I will loose the loins of kings…I will go before thee, and make the crooked places straight…that thou mayest know that I, the LORD, which call thee by thy name, am the God of Israel."
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