Super Mikey

Super Mikey’s origin story from a Super Mom’s perspective: 

“Super Mikey was a full-term baby born via c-section. The first couple days, he wasn’t eating well. He was slightly jaundiced, and it became harder to soothe him. Our pediatrician took an X-Ray of his belly to see if anything was going on. We found out our little guy had ruptured his intestines! We were told he needed emergency surgery, but his platelet count was too low for surgery. He was transferred to a children’s hospital and given platelets to help him get strong enough. Once the perforation was repaired, the surgeon wanted to get a biopsy of his colon because he suspected Super Mikey had Hirschsprung’s Disease. We had no idea what that was. Basically this rare disease (1 in 500,000) is when the colon is essentially dead & not getting rid of waste. In order to fix this, surgeons remove the dead part of the colon and pull down the intestines to create a new colon. After a very long day & rollercoaster of emotions, the first surgery was done. Our sweet little guy was  recovering in the NICU. The surgeon told us that our son would need 2 more surgeries to complete this Hirschsprung’s process, but for now our son needed to heal and get bigger. He was only 6 pounds, 5 ounces at birth, and at his first surgery, he was under 6 pounds. 

Super Mikey spent his first Christmas in the NICU. Only my husband and I could see him. But after about a month in the NICU, I was taught how to care for his temporary ostomy. He was finally able to come home! Then, after some time, he returned in March for surgery #2. This was the surgery where they created him a new colon since they had to remove all the non-functioning parts of his. At the end of April 2015, it was time for surgery #3 where they essentially reverse the ostomy so he can start to allow his body to act normal. This was an exciting time because anyone who has dealt with ostomy care will understand I was glad to be done with that! 

Things seemed good for awhile after surgery #3. Super Mikey was growing well, and although he was behind in his milestones, more concern was given to his immediate problems, such as distention in his stomach. He had started having what we called ‘episodes’ where he would scream and cry in pain and tighten his legs and body for small bouts of time, usually after he ate, but also at other times. We learned Super Mikey had EOE (eosinophilic esophagitis), which was inflammation in his esophagus which was causing him pain. Thankfully there was medicine that would help. The doctor also wanted to do allergy testing to see if something he was eating was causing his inflammation. That’s how we found out he had a wheat allergy, so it meant a new diet for him! After a week or so on the medication, Super Mikey’s ‘episodes’ finally stopped, and everyone was in a much better place! 

Things seemed good at the time. We had made a big move to a different city, and we finally found a pediatrician who listened to our other concerns about developmental delays! Our son didn’t start crawling until he was close to 18 months old, and he wasn’t standing or walking. We still didn’t know if he could hear. The new pediatrician referred us to all the different specialists. He had a hearing test done, and we found out that he had moderate-to-severe hearing loss. His protruding chest bone was pectus carinatum, and he had fluid buildup in his ears that meant he needed ear tubes. He was also fitted for hearing aids. He started getting PT, OT, and speech therapy.

While this was happening, our new pediatrician asked if we had ever done genetic testing for Super Mikey because there were some indicators she believed could be related to certain diseases. We hadn’t ever considered genetic testing, but all the specialists had no idea what could cause all his differences.

FINALLY, after 4 years of doctors, surgeries, and therapies, we had an answer… Super Mikey has alpha-mannosidosis (a lysosomal storage disease). If you haven’t heard of it, it’s because it’s so rare there are only maybe 200 cases known in the world!!! Super Mikey’s genetics team has never dealt with this disease, and they aren’t familiar with it. He is the first known case in our state, and there is no known cure. He is likely to only have the cognitive understanding of a child, and he will likely be wheelchair-bound as an adult. But his life expectancy is good! He should live to be 40-60 should he not have other problems arise. We have found some families who have kids with this disease on Facebook, and though every case is different, it’s nice to have someone else to share stories with or talk about things with. 

Super Mikey is my superhero and the strongest and toughest kid I know. He’s always happy and can make anyone love him!!! He’s rare and perfect, and we love him so much!!” –Super Mom Audrey.

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