Dear Batten Disease

 Dear Batten Disease CLN3,

Four years ago, on May 12, 2022, we heard your name uttered for the first time. Our firstborn son was diagnosed with a disease we had never heard of before. A diagnosis that would rock our world, that would change our lives and our thoughts, plans, and dreams about the future. My husband and I had no idea that we were both carriers of a deadly neurological disease that would slowly take abilities away from our son. Wewere seated in a specialist office after a morning full of eye tests then we were handed some papers on what Batten Disease was. The sympathetic look in the doctor's eyes as he told us he was sorry, told me that the news wasn’t good, that we were dealing with more than just rapid vision loss. Basically, we were handed a diagnosis with no hope.

A diagnosis that was going to take away not just our son’s vision but would slowly take away his ability to walk, talk, eat, and finally breathe.

At the time, there was literally nothing we could do. There were no treatments and no cure. We were supposed to make the most of every moment. Further, we were encouraged to make as many memories as possible and work to make dreams come true because of the progressive nature of the disease. We have tried our best to do that. We have filled the past four years with ordinary and extraordinary memories, with joy, laughter, tears, and frustration. Along the way, Team Peter was formed, and Choose Joy became our family’s motto.

Here we are 4 years later, after we first learned you exist. Peter has issues, but he continues to set goals and achieve them with leaps for joy. He has written and published two books, he has learned to snow ski, he scored a goal in soccer, he won best in show for his Lego at the Loudonville Fair, he participates in the Special Olympics in running and throwing, and he has made huge strides in learning to read and write braille.

Even while you, Batten Disease, try to slowly take his memories and abilities away from
him. We have had some really rough patches. We have days where there are tears of
sorrow, tears of frustration, more questions than answers, and oh, the sleepless nights.
However, with the help of some trained professionals, some changes in routine, shifts in
perspective, a drug called Miglustat, and so many prayers and grace, Peter is doing well.
Now Peter is not cured of you, we know that. We still have checkups every six months
with a team of doctors and specialists, usually that appointment comes with blood work
and orders for an MRI or a 24-hour EEG. He continues to struggle with his memory, both
long-term and short-term, which causes frustration and anxiety; at times, he struggles to
find words or remember concepts he has learned, or sometimes what he was working on
on. We do not know how long the Miglustat pause will last. But we do know that God
will be walking with us no matter what tomorrow holds. And we know that Team Peter
will keep standing by us and supporting us. And we know that Peter will keep jumping
for joy for as long as possible.

Batten Disease, you tried to wreck our world, but you did not. We are still here, and we 

are still choosing joy. You tried to isolate us, but Team Peter stepped in and supported
us, prayed for us, cried with us, celebrated with us, advocated for us, and continues to
walk with us through the highs and lows. Batten Disease, you tried to write our story,
tried to control it. Peter is going to write his own story. Sure, you will have a part in it,
but you will not have the whole story.

I am reading the Bible story of Joseph to Peter at bedtime currently. We are almost at 

the part where Joseph says to his brothers; “You intended to harm me, but God
intended it for good.” Genesis 50:20 Batten Disease you tried to take everything from
Peter, you wanted to harm him, take everything from him, but you cannot take his joy,
not today.

Batten Disease, you have wreaked so many children and families, and you continue to

wreak havoc on them. But it seems like the tides are turning, and there is promising
research that hopefully one day soon, families receiving a Batten diagnosis will at the
same time, be given treatment options, not a death sentence.

Today and every day possible, we will keep choosing joy. We will not allow you to write
our story.

Sincerely,
Peter’s mom
P.S. Thanks for helping us change our perspective. May 12th, 2026, Peter hosted his
second book signing. And we will do everything we can to help him to keep achieving

his dreams.