Thanks to Jennifer VanHoutan, the mother of two children with late infantile Batten disease, for letting me share the following:
***
Imagine your child tripping over his feet and eventually not being able to walk. Imagine 15 months of your child regressing and no answers as to why?
Imagine seeing over 100 seizures in 2-1/2 years.
Imagine your child swimming one summer but the next summer he is expressionless when you take him into the pool.
Imagine your child being able to play tee-ball and now can no longer hold a ball or bat.
Imagine your child not being able to hug you or say “I love you” anymore.
Imagine your child having no known friends he/she talk about.
Imagine your child never being invited to a classmates birthday party.
Imagine your child singing the “ABCs” and can no longer speak a word.
Imagine your children taking 58 medicines a day.
Imagine your 6 year old having the mind of a 4 month old.
Imagine having only 25% chance per child to pass on a defected gene and it happening to 2 out of 3 of your children.
Imagine something so rare the chances of winning the lottery are better.
Imagine all day your 6 year old needing 100% support and supervision.
Imagine a disease that takes away a childhood and then the child.
Imagine no cure….yet.
As you know, we don’t have to imagine this – this is our reality. As it is for many other families we’ve met during the last 2 years. Our goal today, and for the rest of our lives, is to bring awareness and raise funds to support research for a treatment for a cure. Noah hit every milestone on time until he was 3 and he was a bright kid. Laine still talks, but her speech is regressing and her gait is widening. Emily has a sharp reality as to what is happening to her siblings….can you imagine?
***
It’s impossible to put a value on the life of even a single child. So while Batten disease is rare, believe this: no child or family should have to face its unimaginable horrors. We can ignore Batten disease, but at what price? Is Noah’s life not worth fighting for? Or Laine’s? Or Taylor’s?
Batten disease changed my life, and I know what it does to children and families in the worst possible way. It’s dragged me to hell and back.
Yes, Batten disease is rare. But look at it this way: there are hundreds of children currently living in the United States alone who will die of some form of Batten disease unless a cure is found first. And that’s not to mention all of the children living across the rest of the world today or, for that matter, the children who haven’t even been born yet, many of whose parents are walking around without the slightest idea that they carry the gene responsible for Batten disease. Like my parents, they won’t find out until they watch their son or daughter experience unexplained deterioration and go on to receive a wrong diagnosis or two or three before finally arriving at the catastrophic conclusion that their child is destined to die young, all because of a mutation on a single gene from out of the thousands upon thousands of genes that make up a human being.
Batten disease is simply too tragic too ignore. In July 2006, my family asked friends for one thing: to believe in miracles. In the beginning, we asked people to believe for Taylor’s sake. Today, I’m asking you to believe for Taylor, but also for Noah, and Laine, and all of the others whose lives are on a cursed ticking clock.
