The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

EIN: 45-4020102

July 15, 2019

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Louie

Louie was born on October 9, 2018. He was our miracle baby and made our family complete. He forever changed our lives. The first year of his life, Louie brought joy to everyone around him. He was always happy. 

 

On October 21, twelve days after Louie’s 1st birthday, the nightmare began. It was a normal Tuesday morning. The kids were eating breakfast and getting ready for school. My husband and I were sitting on the couch watching Louie play. And then like that my life changed. Louie fell back and started shaking, his body was stiff. He started turning blue. My husband was holding him and saying, “Stay with us, Louie,” repeatedly. I was on the phone with 911 begging them to hurry. By the time the EMT's arrived Louie was out of it, we thought maybe it was a seizure but were not sure. 

 

As I was checking Louie into the hospital,  I heard my husband scream, “It’s happening again!”  I ran and that’s when we heard the nurses say, “He’s having a seizure.” After that moment, everything was a blur.  Louie started having seizure after seizure. His oxygen dropped lower and lower with each one.  With his oxygen dropping and having so many seizures, doctors decided they needed to airlift him to a local Children’s Hospital. I begged to ride with them but I was not allowed. 

 

As my husband and I drove to the hospital, I stared at the sky trying to see the helicopter with my baby boy in it. My husband and I were speechless, confused, and devastated. When we arrived at the hospital, we were able to see Louie right away. He continued to have seizure after seizure. They did so many tests...EEG’s, MRI’s, spinal taps, and so many blood tests. 

 

After four long days in the PICU, they gave him a medication called Keppra that controlled his seizures and we were sent home. A few days later, Louie started breaking out in a rash.  Doctors took him off Keppra due to his allergic reaction and put him on a new medication.  Not even twenty-four hours later, he started having seizures and we were taken back to the hospital by ambulance.

 

This episode was just as dramatic and horrific as our first one. The words "code blue" had a whole new meaning to me. We spent Halloween in the PICU. All I could do was sob and hold my baby boy thinking we should be trick or treating. I just wanted to wake up from this nightmare. We were sent home a few days later on phenobarbital, still not knowing what was wrong with our precious boy.

 

We waited on genetic testing for four weeks. During those weeks, Louie stayed seizure free. I really believed that the tests were going to come back fine; that this was just something that he would grow out of. When I got the call and heard the neurologist’s voice, my stomach dropped. I knew it was the news I did not want to hear. Our son has PCDH19. This is extremely rare in boys and was not expected to be the results.

 

“Is there a cure? What does this mean?”

 

He replied, “No, there is not a cure and we have no idea what this means for him. You have to take it day by day.”  

 

I often find myself lying in bed and replaying every moment of this. Watching your baby have seizures never gets easier. Watching your baby stop breathing is the worst feeling you can ever experience. I often find myself watching him sleep and begging and pleading for this to go away. Every night, I sing to him, You are my sunshine, my only sunshine. When I get to the part of please don't take my sunshine away...I mean every word of it. The seizures take our sunshine. It is the most helpless feeling to watch your child go through this.

 

Since October, Louie has had two other episodes of clusters and scary oxygen drops. Every single time, it’s been awful and dramatic. We have spent weeks in the hospital and he’s had hundreds of seizures. The longest time span of Louie being seizure free is two months and two days. The  medication he takes has so many side effects. Louie is currently not talking and has other delays in his development. We are staying hopeful and are receiving different therapies to help him. We have great support systems: our family, friends and the Alliance have been unbelievable. We are very blessed.  

 

It’s a difficult journey, but Louie amazes us everyday! He is so brave and so sweet! His smile melts my heart. I am so proud to be his mom. He is our miracle and continues to teach us to cherish each day. I pray every night for our sunshine not to have seizures and I try not to wait for one to happen. We are learning to enjoy every good day and to fight through the hard ones.