Please note:Jack does not know his prognosis. He does not know he has Battens disease. His parents plan to have these hard conversations with him but the time is not right. At this time, they are keeping it simple and telling him that his visits to the doctor are due to trying to seek answers and help him cope with his vision loss.
Please don't speak about this in front of their children or your children. We want to make sure Jack hears this when it's time and from his family and doctor.
A Letter From The Timmerman Family
What began with concerns regarding Jack's rapidly declining vision quickly turned into hospital stays, doctor visits throughout Columbia, Trips to Duke University, brutal exams (for an adult, much less a 7 year old), genetic testing and more. We were devastated to learn that Jack has an extremely rare genetic condition known as Batten Disease.
Batten disease is a group of fatal genetic disorders. There are 13 types. Jack is affected by the CLN1 variant. The disorder affects the body’s ability to get rid of cellular waste (lipids and proteins), so they build up in cells all over the body. The buildup causes seizures, vision loss, problems with thinking and movement, and eventually, death. There is no cure for Batten disease.
We have had evaluations at several Battens clinics across the country, including Johns Hopkins in Baltimore and Nationwide Children’s Hospital in Columbus, OH.
We are grateful to have a comprehensive group of experts as our care team to lead us down this unknown and terrifying path.
Currently we are actively seeking out ways to delay the symptoms and progression. We have been to several Battens clinics across the country to find a comprehensive care and potential treatments. There are currently enzyme replacement therapies (via brain infusions) to slow down the progression of the disease in several of the variants— but not Jack’s. More research must be done. We are hoping something may become available soon but we have no timeline for that.
In the meantime, we are actively raising awareness and raising funds to put toward this research, to get clinical trials in place, to pay for the process of getting access to treatments.
We hope that by putting a light on this, additional opportunities may present themselves… Both for Jack and other children with this disease. We would love and appreciate it if you would lift Jack up in your prayers.
It has been humbling to see and experience the love and kindness that so many have shared with our family over the last few months, without knowing many of the details. Words will never be able to describe how much that has meant to us. Our family will need your continued support over the months and years ahead as we navigate this journey. We love you all.
We are all excited to show our support to Jack, Jaime and the entire Timmerman crew. Our superhero inspired event has the cutest retail components so we can show our support at the event and beyond.
Jack was diagnosed with a rare genetic disease called Batten disease - CLN1.
Batten Disease attacks the eyes first. We first noticed that something was off with Jack when he started to experience a decline in his vision summer of 2022. We saw an ophthalmologist but she didn’t see anything that required glasses.
Last Christmas it had progressed significantly so we got him glasses. We quickly realized that was not the answer. Our second trip to the ophthalmologist early this past summer (2023) landed us in the hospital for an emergency cat scan, MRI & other invasive tests to rule out brain tumors or hemorrhaging. We were released but referred to a retina specialist to figure out what was going on with his eyes.
We were finally referred Duke University where Jack and both my husband and I did genetic testing. After a few weeks, we got a call from the geneticist with a diagnosis we could never dream in our worst nightmares.
Jack is the 7.5 year old son of Jaime and Ned Timmerman. He is an amazing big brother to his 3 yo twin siblings, Judah and Lylah Claire.
He came along after many years of fertility treatments & miscarriages.
He is a smart, funny, creative, inquisitive kid who loves music, dancing silly, telling jokes, jumping on our trampoline, riding on our golf cart and watching (mostly listening to) his iPad. He has the kindest soul and sweetest heart.
He has always been my sensitive one. He has never once complained about his low vision. He lives each day with a big grin on his face, ready for the next adventure, full of joy.
He is a second grader at Lake Murray Elementary School where he has a team of literal angels who have made school a safe and fun place for him to continue to learn successfully despite being mostly blind. He is learning Braille.
Batten disease is a group of fatal genetic disorders. There are 13 types.
Jack is affected by the CLN1 variant. The disorder affects the body’s ability to get rid of cellular waste, so they build up in cells all over the body.
The buildup causes seizures, vision loss, problems with thinking and movement, and eventually, death. There is no cure for Batten disease.
There are various foundations involved in researching Batten disease, donations in Jack's honor are greatly appreciated.
Currently, Jack's family is seeking ways to slow the progression of symptoms.
They have been to several Battens clinics across the country to find a comprehensive care and potential treatments. There are currently enzyme replacement therapies (via brain infusions) to slow down the progression of the disease in several of the variants— but not Jack’s. More research must be done.
On a more daily basis, we try to keep him active as that will naturally delay some of the symptoms. We have him in PT and OT. We walk. We play. But we also know it won’t always be this way. We know Battens disease attacks neurological functioning. We know to expect seizures. It’s hard to think about our future so as much as we can, we try to remain in the day and enjoy what time we do have with him.
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