At our 19-week anatomy scan, we were told Maximus (Max) had some brain abnormalities. With more testing by 25 weeks, he was diagnosed with hydrocephalus and agenesis of the corpus callosum (ACC). The doctors also told us, because he was a male, there was a 10% chance he could have this rare genetic condition called, L1 Cam Syndrome. The doctors gave us all the worst odds that could be stacked against Max, including not surviving birth or dying shortly after. We did our research, we were scared and afraid of all the unknowns, but we had faith. We told doctors that Max was loved no matter how many seconds, hours or days of life he would be on this earth. Max was determined to write his own story, including when he would be born. He decided to come at 32 weeks and was born in the Special Delivery Unit at Cleveland Clinic. Once the NICU team got him settled, he was SMILING. I feel like Max was telling us, “It's okay Mom and Dad, I got this!” During Max’s NICU stay he needed a PIC line for TPN nutrition, he had a difficult bout with jaundice that didn’t seem to want to go away, neurosurgery at 34.5 weeks for a VP shunt, NG tube for nutrition, feeding therapy to learn to eat and of course genetic testing. Right before Christmas, Max was able to eat enough, his shunt was set just right, he could regulate his body temperature and we brought him home. Max spent 28 days in the NICU.

At two months old, we got a phone call that Max’s genetics testing was in and genetics wanted to see him. Max’s test confirmed that he had the L1Cam syndrome. The geneticists explained Max was going to be sickly, prone to seizures, never talk, never walk, live a sickly life and die early. The L1Cam gene controls everything neurological in your body. It was hard to believe this 6lb pound tiny baby that seemed to be doing okay other than bad reflux and some feeding troubles would have this life. Then, 48 hours later he was admitted back to the PICU. A month later he started having seizures. In Max's first year he had multiple ED visits, hospital stays, added complex care, more specialists, therapists, feeding clinic and diagnoses. Through all this, Max developed into a bubbly little guy. He worked hard at therapy, snuggled with everyone, learned to blow kisses and observe everything. At years two years old Max, had a gtube surgery and healed up well. He continued with physical therapy, occupational therapy and speech therapies. He was so happy through it all and continued to grow.

By summer/fall of October 2018, our happy little guy just shut down. He had a rough summer medically. One medical event seemed to be stacked on top of another. Every therapist, caregiver and close family member suspected something was seriously going wrong, Max wasn’t bouncing back. By the start of 2019, Max has lost most of his developmental skills he worked so hard for, no more eye contact, words, and sitting up was difficult. Max had a second neurosurgery to replace his shunt. He spent 2 weeks at Shaker Rehab to regain as many development skills as he could. Then he developed surgical complications right at the end of those two weeks. We spent most of 2019 in and out of the hospital with digestive issues. End of 2019 and into 2020, Max’s Epilepsy became difficult to control. He once again took developmental regression hits. Max’s Epilepsy specialist has worked very close with us to help find the right treatment so Max can thrive again. Max is working with doctors at Nationwide Children’s to address his digestive issues. Max continues with therapies to keep regaining skills. Max has worked hard with his teachers and school therapists via zoom to start showing us just how much he is ready to take on Kindergarten.

Despite the medical appointments, surgeries, hospital stays, therapy appointments and diagnoses, Max is a smiley, giggly and happy guy. He loves Mickey Mouse, music, books and swinging on his swing. He loves his wheels and is a daredevil at heart. He is a fighter, and he is our miracle.