Our first daughter, Basil, was born perfectly healthy besides being colicky and a few minor tummy issues. Of course, we expected our second daughter, Maple, to be born the same. And that is where our journey began.
All newborns get the classic “baby acne” when their soft squishy skin is adjusting to the world but Maple’s was different. A few weeks after she was born she was covered in a pimply rash that would flare and wouldn’t go away no matter many foods I cut out or how expensive the clean baby products I would buy were. Then the tummy issues started. As an exclusively breastfed baby we expected the typical orange cheesy newborn poops every two hours but again Maple was different. She would go up to 11 days without a bowel movement and when they would come out she would STAIN. What would come out was dark, thick, and smelled disgusting. And no, that was not enough for the doctor to look further into it. So then came the screaming… and more screaming… and more screaming. Inconsolable screaming day and night with just tiny pauses to play. These screams would come with flailing and her grabbing her head like her brain was going to explode. Again.. doctors assured us that “some babies are just fussy.” And finally came her weight; Maple dropped from about the 80th percentile down to the 2nd and she was finally referred to a gastrointestinal doctor.
Test Upon Test
We definitely did not know what we were looking for at first with all of Maple’s symptoms but I think we expected maybe some food sensitivities or IBS. The first thing the doctor found was extremely high levels of eosinophils. When I got the call she told me that we were most likely looking at parasites, eosinophilic esophagitis, or leukemia. Immediately our hearts dropped. Things became more serious and testing began to pick up. Maple had an endoscopy and a colonoscopy done which showed us nothing and then a series of more diverse blood tests. Thankfully the blood test finally gave us a solid direction! Maple’s tryptase levels came back elevated. Tryptase is an enzyme that is released from mast cells when they are activated. Usually this would happen during a normal immune response like an allergic reaction, only Maple’s levels were chronically elevated. We were immediately referred to an immunologist for more testing.
This is where our journey seemed to become longer, more confusing, and much more frustrating. The immunologist knew that with Maple’s symptoms plus her chronically elevated tryptase levels she most likely had a mast cell disease.. but which one and how do we manage it?
What Is A Mast Cell Disease?
As any parent would, we began to research this new scary thing that was happening to our baby girl. We learned that mast cells are in every area of the body; bone marrow, organs, skin, and lining the airway. When mast cells are working correctly they protect the body from infection and help with the inflammatory process. However, mast cells are also involved in allergic reactions from small ones to anaphylaxis. A person with a mast cell disease either has an abnormal amount of mast cells, genetically altered mast cells, or the inappropriate release of mast cell mediators at the wrong time. For Maple, this was manifesting systemically. The mast cells in her digestive system were not functioning properly causing either extreme constipation or extremely loose stool both along with intense stomach pain. We began to realize that the reason she would refuse to walk some days or use her hands was because her bones were aching that bad. That mast cells in her bone marrow were not functioning properly. She began to grow old enough to show us that she was getting intense migraines and that’s why she would flail and claw and her eyes. Even after starting medication, these symptoms were constant. Her life was pain and tears with small breaks of smiles.
It Has to Get Better Right? Wrong.
So here there we were trying to take care of our three year old and our one year old with this unknown mast cell disease, trying to keep it together when I felt like all my life was was trying to contain her pain and keep her from screaming while trying to keep my three year old entertained. During breakfast one morning I noticed our three year old, Basil, began to flush around her mouth, checks, elbows, knees and butt. This honestly was not alarming to me at all. I could have fed her something she suddenly became allergic to so no big deal! Except it started happening several times over the next couple of weeks and it was always accompanied with stomach pain and always with random foods and never the same ones. Again, not alarming just confusing. To the allergist we go!
To my surprise, she had no allergies at all. The allergist told me she most likely had chronic hives… seems weird considering she never had hives, it was flushing. But okay, I mean what did I know? We returned home and kept on treating Maple while keeping an eye on Basil and starting a food diary. And here is where our lives seemed to get far more dramatic. One morning during breakfast Basil told me her stomach hurt and I assumed it was another episode of either allergies or “chronic hives.” And boy was I wrong. Within the next few minutes Basil’s entire body was bright red from head to toe and screaming the most painful scream I had heard besides her sister’s when she was in pain. As I’m frantically getting everyone dressed and talking to the nurse at the ER seeing if I needed to take her in, boom, vomit all over my bed and floor. Not only was she fire truck red from head to toe and screaming in pain, she was now violently vomiting. That was my answer; time to go to the ER.
I prayerfully waited that we would get some answers but the labs at the ER showed nothing. They ran everything imaginable including tryptase, all normal. Despite that, the doctor told us that she believed it was most likely an episode of anaphylaxis and prescribed an epipen. With relatively no answers again, we kept watching her and visiting the allergist. At this point we realized that we needed to research on our own more if we wanted answers. Through more research we learned that there are multiple kinds of mast cell diseases, one of which causes reoccurring episodes of the symptoms of anaphylaxis without cause and was not associated with elevated tryptase levels. We pushed the allergist to look into it with no luck and him basically calling me a google doctor.
We asked for Basil’s care to be transferred to Maple’s immunologist. I don’t even think I can consider Maple’s diagnosis as “easy,” but Basil’s seemed much harder. There was clearly something wrong. She had random flushing episodes all the time; sometimes when eating, sometimes when playing or in the car. Some episodes were super mild and Basil didn’t even complain but some were awful and debilitating. As we continued to research and pray, we were confident that it had to be a mast cell disease so we worked closely with a nurse at the Mast Cell Society to come up with further tests we could request including a 24 hour urine analysis. Although Basil’s tryptase levels were normal unlike her sister’s, her urine analysis came back with high levels of histamine. That along with all of her symptoms got her the diagnosis of mast cell activation syndrome.
Trying to Manage
So we had two young kids with mast cell diseases that could not be managed naturally no matter how hard we tried. Our lives from there became wrapped around their symptoms; when they would happen, how to react, and how we could prevent them. Even with both girls on multiple medications and epipens prescribed to both, their day to day routines were highly effected. On top of Maple’s constant systemic symptoms and Basil’s random episodes of flushing with pain, they began to react even to their bath water. The tiny amount of chlorine in the water would not only give them hives but they would become so irritable and tired from being so uncomfortable. Temperature changes began to effect their bodies negatively, certain foods that they had eaten all of their lives started sending them into episodes. It was a guessing game to see when they would react, what it was to or if it would all be random, and how long it would last. During this time I really had to become solely dependent upon God just to survive. There was no physical rest or breaks, nothing to sustain me except God.
On top of medication we decided to start them on a low-histamine diet to see if that would help their bodies stop reacting to anything and everything that could possibly cross their paths (including their own emotions). If you are unfamiliar with a low-histamine diet, you basically can’t eat anything. They were already gluten, dairy, soy, and sugar free but we had to cut so much more. To give you somewhat of an idea of how hard it was, we cut berries, cantaloupe, citrus fruits, all red spices, ground meat, cured meat, leftovers (this was the worst), fermented foods, avocados, spinach, nuts, bananas, chocolate, vinegar, canned foot, and so much more. So on top of what seemed like a miserable experience trying to keep our kids health and happy, we were now eating the most bland diet I could imagine out of desperation for some relief.
At that point we felt like Maple’s symptoms were continuing to get worse. We noticed that when she was in a flair up she would completely lose control of her bladder. Our fully potty trained girl would pee her pants without even feeling it, having no control so we worked with the nurse from the Mast Cell Society again to come up with further testing for her. It was a fight but she was eventually diagnosed with Heredity Alpha Tryptasemia Syndrome. Never heard of it? Neither had we! Maple’s tryptase gene was genetically altered leading to her elevated tryptase levels and her symptoms with multiple organ systems. There was some relief with giving it an official name but it also came with sorrow because we knew then that they both were diagnosed for life. That was just going to be our life. It was hard and unfair but our kids were so strong. I knew that they would have an amazing testimony to tell on how even though they were hurting all of the time, they could still proclaim God’s goodness! There had to be something good worked through this and I assumed that the goodness would be that my kids would be overcomers. Even with a rough life, they would be an example to the world on how to praise God in the tough times. We trusted His plan and could lean on Him and still bring Him glory. That was going to be their story! Well… WRONG.
The Goodness of God
I had my mind made up. I had come to grip with the fact that we just had to deal with their diagnosis’s and diseases and was content with that. I was not angry with God or questioning his love for us or them. I knew God’s goodness was not measured by our worldly struggles. Life was hard but we would live whatever life God wanted us to. And then rocked my world.
In early January of 2020, I was sitting next to my husband in bed and I felt God speak to me very clearly, “I am going to heal them.” Well that was honestly shocking to me because I had never had a thought in my mind that God would heal them. It’s not that I didn’t believe God COULD heal or that he was a God of love and mercy who cared deeply for me and my children, I just really never imagined that something like that would happen for me and my family. It so so fetched from something I would think so when I told my husband we knew it had to be from God. And when God speaks, it is truth and it is absolute so we knew we just needed to hop on board and prepare ourselves and our hearts for whenever God delivered this miracle.
We read every passage in the Bible we could find on God healing people, listened to every sermon we could find talking about healing, and we prayed fervently for God to prepare our hearts to truly believe in what He was doing. This healing was going to happen, God was going to deliver our kids from disease through our hands and we wanted to be prepared.
On Sunday January 26th, 2020 my husband was at church early rehearsing for the worship band and I was getting our three girls ready for service. I remember looking at them while I watched them play thinking that the only reason they were still sick was because we hadn’t just prayed over them. We were spending all of this time preparing ourselves but God said He was going to do it so it was as good as done. What a waste of my time, God’s time, and my girls’ time to let them suffer in sickness when God said He was going to take that from them! I felt underprepared to be a part of God’s miracle and I was choosing to hold it back. This epiphany hit me all at once. It was me! The reason we were still waiting on this healing was because I just wasn’t willing before to put my fear aside and just PRAY. I wasn’t lacking confidence in what God had told me, but lacking confidence that I would be a successful part of a miracle. But this miracle was going to take faith. It was going to take me stepping out in obedience and confidently proclaiming God’s promise over my children without focusing on the “what if’s.”
So I asked them “Do you believe God is going to heal you and take away your mast cell diseases?” Even my children had full confidence in God. After seeing them both shake their heads I laid my hands and began to pray. Together with my four and two year old, we rebuked their disease, cast it out in the name of Jesus, and thanked Him for what He was doing. Their literal child-like faith gave me confidence to be brave and not give into any fear from the enemy who was trying to convince me that it wouldn’t work. As simple as that and it was done. Nothing huge happened to let us know that it was finished but Basil asked me “does this mean I can have nuts?” Well the ultimate test was going to be feeding her anything and everything we couldn’t let her have before so sure! Basil and Maple ate nuts, bananas, waffles, berries, you name it. And……. nothing. Their symptoms had completely ceased. No flushing, no hives, no screaming, nothing at all. How was this real? Could I actually just take them off of all of their medications and expect nothing to happen at all? It just seemed wild! I knew God was powerful enough to heal anyone He wanted but I never imagined it would be my family. And that isn’t even the best part.
As we were celebrating and I was feeding them all of the foods they couldn’t have before for breakfast, Basil began to talk to me about baptism because of a video she had seen at church the week before. She told me it scared her because she would have to go under water. I assured her that she didn’t need to be baptized at the age of four, she could wait until she is confident to go under water and besides, her only job during at that time was to learn about Jesus and get to know him better. She replied “But i already know Jesus. I know He is my savior and died for my sins. I know all of that, mommy!” So I asked her if she wanted to pray and tell thank you for dying for her sins and asked him to be her savior officially. And in the next few minutes our FOUR YEAR OLD accepted Jesus as her savior one hour after experiencing God’s indescribable power in her own body. He not only made her body whole, but He made gave her the righteousness of Jesus all in one day. As if an unimaginable physical healing was not enough, He chose to completely overwhelm us with her mercy and goodness.
Wholly Healed
Now we are here eight months later still living in God’s miracle. Basil and Maple are still 100% symptom free. They are both seeking God at the ages three and five. They pray, ask questions, love reading their bibles, and THEY lay their hands on others to pray healing. Both girls came off of multiple medications that weren’t even subduing their pains when they were on them to be compliantly symptom free with no medication or food restrictions at all. In a matter of seconds God changed the lives of my children forever. They experienced his power in a way that they won’t forget. The power that Basil experienced pushed her to pursue God even more than she was before. We as parents experienced his love in a way that we will never forget. The God who created the universe, died for our sins to give us life, just to be with us. He took the disease that was holding my family in chains and why? For this right now. So our eyes would be opened to who He truly is and the limitlessness of his power and love. So that we can tell the world about who He is. He is the Lord God Almighty; holy and perfect. He pours out his mercy and grace though we don’t deserve it. Jesus died to make us whole as a gift to anyone who will receive Him. A love we really cannot comprehend.
Holy, Holy, Holy is the Lord our God Almighty who was and is and is to come.
Written by Nova Van Anne
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