Payton Patterson - CLN2 - Batten’s Disease

First and foremost thank you for taking the time to read our story and your charitable consideration. Payton Patterson turned three years old May 6th 2022. One short week later, on May 13th she experienced her first seizure. We were told it would never happen again, a once in a lifetime event. On June 5th she was diagnosed with epilepsy after being hospitalized and enduring two grand mal seizures. For the next seven months, her seizure’s became increasingly frequent. By the end of December, little Payton was seizing every three to five days. Her poor little body spent days recovering in bed, weeks inside the house. She went through countless doctor’s appointments, MRI’s, two EEG’s, and several medicine changes which drastically impacted her already overwhelmed body.

Our family survived on simple hope; one day she would grow out of these seizures! One day my baby would get to attend school again. With the seizures being so frequent and severe, we had to remove her from school. We held out hope that some day Payton wouldn’t be exhausted by a simple day’s play; she would get to see her friends and just be a little kid again.

That one day of dreaming came to an end on April 4th, 2023 when her genetic testing results came back with tragic news: CLN2 - a genetic brain disease due both parents having one specific mutation of a gene. As a result, her body does not produce the protein enzymes required to break down toxic cellular waste. When the waste builds up in the body, her brain forgets how to operate and the brain cells tragically die.

Unfortunately this is a disease that progresses quickly. At some point Payton will experience loss of vision, and motor skills including her abilities to walk and talk. Regretfully, I share that today there is not a cure for this disease....and our lives broke completely knowing the life expectancy based on her age at symptom onset, is between ages 8-12 years old.

While her diagnosis is absolutely devastating, we know how lucky we are to have her. It’s a one in a million chance for two people who both carry the mutation to create life and drastically lower odds for that life to make it past birth. We’re also very blessed to be under the care of an outstanding team at Mott’s Children’s Hospital, who have invested countless hours researching this disease and seeking out experts from across the country to help in any way possible. Through their tireless efforts we were made aware of a revolutionary treatment. As we tried our best to fully grasp her diagnosis, Mott’s was busy coordinating everything required for Payton to receive this treatment. They had to bring in equipment and doctors. It’s honestly overwhelming how well they’ve cared for her and us a a family.

I’m happy to share that on Tuesday April 18th, Payton underwent a successful surgery to have a Rickham reservoir implanted in her brain. This reservoir will deliver the protein enzymes her brain is missing! This treatment has been approved for six years in the US. Studies show the infusion treatment has been able to delay the effects of this disease. Some patients have gotten back the skills they seemed to have lost. There are even patients who have continued to develop beyond where the were at symptom onset. In trials in the UK, doctors have been able to further slow the loss of vision with direct treatment of the eyes.

This brings us such hope-

We hope that these treatments will provide a better quality of life, slow the regression of her speech and walking, and allow her to be little and enjoy her family as much as they enjoy her. We will continue to pray for additional treatment options and a cure.

Payton will be going to Mott's every two weeks for the rest of her life to receive these treatments. Funds raised here will go directly to costs associated with the treatments she has received to this point, and her continued care. Thank you again for taking the time to learn about our wonderful little girl and your charitable consideration.