Just one moment… As a documentary filmmaker sometimes that’s all I’m looking for. One moment that defines the story, something I couldn’t have planned for in pre-production, something that would never make it to the shot list because I couldn’t have imagined it. And it’s a moment in which I, as the filmmaker, connect with the story, when it gets inside of my heart and won’t let go. On my most recent film, when that moment happened, I immediately realized it was the most compelling, intriguing and intimate moment I have witnessed in my career.

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The film is about a seven year old girl named Katy. Like myself, Katy has Phenylketonuria (PKU), a rare genetic disease in which the body cannot metabolize protein. Despite the shared disease, however, we have very different stories. I was diagnosed at birth and immediately placed on treatment. Katy wasn’t as fortunate.

She was born in Mexico, and at that time, newborn screening was not mandated by the government. She was born in a private hospital, and although “extra tests” were offered, they weren’t adequately explained to Katy’s parents. They chose not to run the tests, and for a few weeks everything seemed fine. A few months later, however, Katy started having problems. After a long struggle to find answers, Katy was diagnosed with PKU. She was 13 months old. Although she was eventually diagnosed and placed on treatment, the months without treatment took their toll on her.

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Today, she is seven years old. Her overall cognitive level is two years and nine months. She has severe developmental delays and requires special education. She has also been diagnosed with Autism and ADHD. She cannot dress herself. She cannot communicate.

Since I could not communicate with Katy, I simply observed. I noticed how much love her parents, Isaac and Michelle, shower on her. Michelle became a special ed teacher because of Katy’s developmental delays, and is now her teacher. Isaac is a musician and has written numerous songs for Katy.

I had planned to get some shots of Isaac playing a song for Katy. So I asked him to go into Katy’s bedroom with his guitar, sit on her bed and sing a song to her. I’d stand back and do what I do, just observe with my camera. As soon as I started recording, and heard the first lyric, I knew I should expect one of those elusive moments I’m always seeking.

Isaac looked into her eyes, strummed the first chord on his guitar and sang the first few lines of the song, “I’m captivated in you. Caught up in your eyes. Desperate for your touch. Do you realize?” And then it happened: one of those real, raw, unplanned moments I had been waiting for. Katy jumped up on the bed, got behind her Daddy and climbed on his back. I could tell Isaac was connecting with his daughter in one of the only ways possible. As he continued to sing, his voice cracked.

When I work, even as I’m searching for one of those moments where the emotions are real and raw, I’m able to keep a certain level of emotional distance between me and my subject. It’s the only way to function when you’re trying to tell a story. You allow yourself to connect with the story, but you also fight to keep control of yourself…to remain focused and finish the work. But when this moment happened, I was fighting so hard not to put the camera down and just weep.

I’ve had plenty of moments where I was at the brink of losing it like this. When I was in TV news I covered quite a bit of tragic stories. But this story was different. I connected with Katy in a very personal, unique way. Her story could have been mine. I realize how fortunate I am to have been screened at birth and immediately put on treatment. That obviously moves me at a very deep level. But I also look at it another way…

My story could have been hers.

I’m reminded how crucial newborn screening is, not just for PKU, but for other rare diseases that threaten the lives of newborns. One simple test, or lack of it, determines a child’s future. One moment that could have changed Katy’s life.

A moment that never happened.

I hope that when people watch my film that they connect with that moment that captured my heart. I hope they see how not screening a child at birth can rob a parent and child of one of the most basic gifts of life– communication. But I hope they also see something else in that moment: a beautifully happy child. Despite her struggles, despite her developmental delays, Katy is more than an object of pity or promotion for a cause. She is a beautiful child who is happy.

At least that’s what I see in that moment.

About The Author

Kevin Alexander is an adult living with Phenylketonuria (PKU) and a documentary filmmaker. His film, “For Katy”, is available on his website: www.pkulife.tv.

5 thoughts on “A Song for Katy: How One Elusive Moment can Affect an Outside Observer”

  1. Michelle Hays says:

    Kevin, that was beautifully narrated amd now I am in tears. I appreciate you reversing the story, saying “my story could have been hers…in a moment…a moment that never happened.” Thank you also for not making her a spectacle for pity, and for seeing her for who she really is. Happy. It is this joy that brings us true, deep, healing- and it fills up with hope for the future.

  2. Susan m wiley says:

    I just wanted to say how grateful I am for your words. My grandfather passed the bill in senate to start testing babies in the heel at birth for PKU. he was commissioner of the department for the mentally retarded(that is what it was called in the sixties). My brother Bob was one of the first babies in New York State to then be tested. Later my cousin Steven tested positive for PKU. He was able to watch what he ate and he is a thriving very healthy adult today. This disease is near and dear to my heart as I am a Special Education teacher and we often don’t see this too much but every once in awhile I will get a child with this from another country. Thank you.

  3. As sister of a Down’s brother with autism, I cannot stop weeping at the beautiful words in those lyrics or at your profound comments about Katy. I struggle to find words to express the loveliness of special needs children and their impact on our lives. Thank you.

  4. Michelle Hays says:

    Susan M. Wiley, I am so impressed with your comment. That is an amazing testimony! I too, am a special education teacher. I hope we can be in touch in the future.

  5. Ana M Rodríguez says:

    My son Jacob was diagnosed with SMA at the age of 2. He is turning 11 on May 21. He is a smart little boy and at his young age he has accomplished so much. He loves baseball. With the help of his coach Jacob was able to have his own baseball team and play baseball. It was very exciting and emotional to see my son play his favorite sport. In 2014 Jacob was awarded with the Navy Army Community Hero Award for the month of June. Jacob has won first place in Special Olympics bowling competition three years in a row. This summer Jacob will represent RGV Special Olympics in Austin. Jacob has so much more to do and accomplish in life. He is a fighter and has dreams like any other child.

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