Let me start from the beginning of Malachi’s story.
Imagine noticing a movement you feel is a little off but it’s your first baby and you hear babies have weird movements all the time. Then 4 days you notice your little precious gift who has barely even lived in this world is actually having seizures. My heart sank as my husband and I looked at each other and knew without saying we needed to take our new baby to the ER. It’s a nightmare we will never forget. I was crying, clinging to Malachi as we walked in. My husband nor myself had ever been to the ER. It was all so scary and especially because our first time was for our baby. They poked and prodded our son. They escorted us out of the room as they did a spinal tap on him. We could him hear him crying down the hall. We couldn’t bare it. We had never felt such pain. Then being judged as if we caused harm to our baby to have seizures. Then we had to take an EMS to a larger hospital where they hooked a EEG to Malachi for 24hrs and told us he had focal seizures. This made no since to us. How could our little baby have seizures. No one in our family has seizures or any kind of neurological issues. We started him on medication. It worked for two weeks. The doctor suggested genetic testing to find the cause of his seizures, because his brain mri, spinal tap and blood work were fine. Then come to find out Malachi has a deletion on his 3rd chromosome. On that chromosome is a gene called UBA5. At that time we knew he had one bad gene copy. But you have two copies; one from Mom and one from Dad. Two mutated copies result in a very rare and awful condition called eiee44. Malachi’s first neurologist really thought he had this because he tried and failed 3 seizure medications and he was starting to show signs of being behind developmentally. All this doctor could say was I’m sorry, this condition is awful with a horrible prognosis. There is nothing more I can do, I suggest you go to Duke. Imagine the pain I felt hearing this about our precious, beautiful baby. All while my husband was getting ready to leave for Coast Guard boot camp. Then I started to notice his seizures change. Over night he stopped smiling, cooing, giving eye contact and stopped eating. I took him to duke ER and begged and pleaded for them to admit Malachi. They dismissed us and scheduled an appointment for two weeks in office. As soon as the doctor saw him they admitted him. They suspected he had infantile spasms also known as west syndrome. Malachi was having a seizure every hour. They did another spinal tap, blood work, and placed a ng tube. West syndrome is also not common. Out of the 4 million babies born a year, only 3,000 babies will be diagnosed with west syndrome. When they confirmed he had west syndrome they told me Malachi may never smile again or talk or walk. Facing the fact I may never see that sweet smile crushed me. All while my husband was away in the coast guard. The anguish we have felt we wouldn’t wish for anyone to experience. Then we did more genetic testing to look at his other gene copy to still see if he had the other condition eiee44. I couldn’t handle anymore. I was told we needed to do it and would help to know if he had another underlying condition that could have started the infantile spasms. No one told me insurance wouldn’t pay. No one should have to worry about insurance paying when you need to focus on your child and praying everyday a seizure won’t take his life or the medication they have to use doesn’t damage his heart. Then our son was hospitalized for hypertension. His heart was a ticking time bomb caused from the medication treating his spasms. Then the medication lowered his immune system and was hospitalized again. His o2 was in the 60s. That’s extremely dangerous. We were taken by ambulance from the pediatrician. We got lucky he got treatment in time. Mind you I took him to the pediatrician earlier that week for his cold and nothing was done then. Malachi is a fighter. We could have lost him more then once. His journey is still long. There’s is a chance the spasm seizures could come back til he is five. We don’t know if he has another condition besides west syndrome. His other test for eiee44 came negative. He is behind developmentally and requires lots of therapy. Doctors watch him because he’s had issues swallowing and we have been able to avoid a g tube at this time but don’t know what the future holds. All we want to do is provide the best for Malachi. We want to help him progress and give him the care he deserves. He is so strong. In the last three weeks he started to smile again. We have hope for our son and will not give up.
Nobody is prepared to have a special needs child. No one thinks it will happen to them until it does. We should only have to focus on him. The stress of that is more then one should bare. Adding stress of medical bills on top of that just makes it unable to breathe. We hate to ask for anything. But it’s for this precious baby who didn’t deserve any of this. We thank you so much if you can help. With love The Pickering’s.
- Jeff LaMura
- Michael Phillips
- Brooke Schlaseman
- Scott Hendricks
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