(September 23, 2003 – October 27, 2022)

Kain Brody Unzicker was born on September 23, 2003, to Dennis Unzicker and Christina Hernandez at Desert Regional Medical Center in Palm Desert, California.

Kain grew up perfectly healthy until he was 10 years old, that’s when he had his first seizure. He was misdiagnosed with Juvenile Myoclonic Epilepsy (JME) after being assessed by a doctor. He started having grand mal seizures about once a month at first, but the medications they prescribed didn’t seem to help and they got more severe and closer together.

He had his first seizure over 10 minutes in the 8th grade at school, and another less than a month later. We kept trying higher doses of medicines and changed them many times, until we found the combination he is on now, that seems to make them less violent and shorter in duration.

In 10th grade, the seizures were happening more frequently, and his neurologist at St Luke’s Children’s Hospital suggested a VNS implant, genetic testing and a second opinion from Seattle Children’s Hospital.

We received the diagnosis when the results came back, and they found the EMP2A mutation. They decided to perform a biopsy to confirm the presence of Lafora bodies, which came back positive. This was extremely devastating to hear that it wasn’t JME but in fact a death sentence with Lafora disease.

A terminal neurological degenerative disease that has no cure. They also advised that he may only live up to his mid-twenties before passing away from uncontrolled seizures or pneumonia.

 

Kain’s cognitive decline started to effect school in the 9th grade, but until his proper diagnosis, it was thought his troubles were related to medication side effects and mild brain damage from the longer seizures he had had. By 11th grade, the seizures became more frequent, and it was no longer safe for him to ride the school bus because laws prohibited him from carrying rescue medication on the bus, and the drivers were not qualified to administer them, his Doctors also deemed continued education unnecessary.

Kain was very adamant and determined to finish school, so we agreed to transport him ourselves, and his teacher learned how to administer his medication.

Against all odds, Kain graduated at 17, before his decline became more severe. Kain is very proud he accomplished graduating at Idaho City High School, class of 2021 and receiving his diploma. He achieved graduating during a pandemic and while the progression of Lafora disease continued. He never let anything stop him.

Dennis and Kain’s whole family were very proud and happy to see him graduate. Father Dennis shared, “He did it under so much pressure and under circumstances most kids would never have to worry about.

Unfortunately, Kain is now wheelchair bound and suffering from ataxia, the lack of muscle control or coordination and dysphagia which is where he can no longer swallow normally. Kain was given a permanent Gastro tube port for medication, food, and hydration.

He rarely talks anymore and when he does, he struggles tremendously. The myoclonus is affecting every muscle in his body, he can’t dress himself or bath and needs help going to the bathroom.

Father, Dennis stays home full time to care for him. “It’s the hardest thing I have ever done, but he is worth every second of struggle, and every tear. He can’t do much of anything these days. I watch movies with him a lot and listen to music. I take him everywhere I can to enjoy outdoors, but busy places are difficult for him.” 

Kain is now 18 and is still waiting for a cure!

Please help by creating awareness and donating to Chelsea’s Hope Lafora Children Research Fund where the mission is to fund research into treatments to find a cure.

Kain is next to a 1967 Corvair.  His family has a passion for restoring cars.

Kain’s love of cars was passed down from his dad and uncles.  Dennis (Kain’s father) shares, “It started when he was old enough to say “car”, he would love to play with them, see them, and ride in them.”

 

Kain was granted a Make-A-Wish and choose to spruce up his Corvair with a paint job and complete the interior. He chose Cobalt Blue for the paint and loves the color.  The interior is blue and white.

For the Make-A-Wish reveal, shirts were created with “Team Kain” for this spectacular event.

Dennis and Kain did a lot of the mechanical work during quarantine.  They fixed the wiring, lights, tuned up the motor, making sure it would run properly.

Kain was driven to graduation in Covair, he said  “That was really fun”.

 

 

 

Give $22 to honor Angelina’s heavenly birthday! She should have turned 22 on March 4, 2026.

Sydney, Australia

This is Angelina Lati from Sydney, NSW, Australia. Angelina lost her fight with Lafora disease on May 29th, 2025, at the age of 21. This is her story.

Lafora disease is a terminal neurological disease characterized by progressive myoclonus epilepsy, tonic-clonic seizures, cognitive decline, childhood dementia, and ataxia, just to highlight a few.

Before Lafora symptoms, Angelina was a typically developing teen, attending school full-time with no signs or symptoms previously. She was very social with her family and friends, participated in school musicals and drama, and did acting courses outside of school hours. She was an aspiring makeup artist with plans to start beauty in her senior school subjects and tertiary education. Overall, she was a good student and easily achieved all her academic milestones. Angelina was very goal driven and had big dreams.

 

In September 2018, Angelina experienced the first onset of symptoms, a seizure, at 14.5 years of age. Angelina was hospitalized and misdiagnosed with Juvenile Myoclonic Epilepsy (very common with Lafora Disease patients). After 9 months, Angelina was hospitalized again due to increased frequency, duration of seizures, and suspected cognitive decline.

After almost 3 months in hospital doing multiple tests and trialing alternate medications, in September 2019, exactly a year later, genetic tests showed she had a mutated gene named EMP2A. This mutated gene is the cause of a disease named Lafora disease.

Angelina is extremely photosensitive and action sensitive. Photosensitivity refers to increased sensitivity to bright and flashing lights. Angelina has experienced seizures triggered by being present in very bright environments. Angelina’s action sensitivity is also known to trigger seizures, whereby Angelina experiences an increased frequency of seizures the more she physically exerts herself. It is important for Angelina to have periods of rest and inactivity to prevent seizures, so she is mainly contained in the home or a controlled environment for her safety.

In late May 2020, Angelina was hospitalized due to the increased frequency and duration of seizures. During her hospitalization, Angelina experienced a significant decline in functional mobility. Angelina was having difficulty walking independently, speaking, and swallowing medications. Angelina underwent a surgical procedure to insert a gastrostomy tube to allow for PEG feeding and administration of medications as required, as well as the insertion of a Mirena IUD to control her hormone levels since those also seemed to trigger seizures. Angelina’s medication dosage was increased to control the seizures, and she was discharged from the hospital and stayed in a respite facility during her recovery.

By June 2020, Angelina began to experience an increased frequency of significant behavioral challenges, including irritability, non-compliance, and mood swings. These symptoms commonly occur with changes in the brain’s frontal cortex (associated with progressive dementia) and involve disinhibition. During these behavioral periods, Angelina refuses to eat anything, assist with self-care activities, get out of bed, or take her medications. Angelina has experienced a significant loss of short-term and long-term memory, and her processing speed has slowed significantly so it takes Angelina longer to be able to process and understand instructions or follow conversations. 

In June 2018, Angelina’s schoolwork showed full pages of neat writing, underlining, answering questions and problem-solving. Less than two years later, Angelina was lucky to write a few words, read, and struggled to make simple decisions such as what shirt to wear.

August 2020: At Bear Cottage, NSW Palliative Care Hospital for Children. Angelina is currently on several medications for the management of seizures and behavioral management, but these will eventually stop controlling her symptoms as they are already difficult to treat. She is currently having symptoms daily; it is only a matter of time before her health declines further and she becomes bedridden. Angelina is at high risk of Sudden Unexpected Death in Epilepsy (SUDEP) so every day is like a ticking time bomb. Her family is on high alert all day every day and have installed cameras to monitor her constantly.

Lafora disease is a rare disease that affect less than five in 10,000 people with only 80 registered Lafora disease patients around the world at this stage. It is believed that there are about 250 children around the world with this disease. Angelina is currently the only registered Lafora disease patient in Australia. There may be more children, but they could be misdiagnosed or asymptomatic at this stage. 

There is currently NO cure for Lafora Disease.

Researchers have recently discovered that it​ is caused by a mutation in one of two genes that control the way cells store glycogen, a form of sugar, resulting in a toxic buildup of Lafora bodies in the brain.

Pharmaceutical companies in the USA have been working on treatments and therapies and planned to start clinical trials in 2021, but they did not happen, and families like Angelina’s are still waiting. 

Access for Angelina to this drug could be years away, though researchers like Dr. Matthew Gentry, University of Florida College of Medicine, who founded the Lafora Epilepsy Cure Initiative (LECI), are doing great work.

Angelina lives at home with her family, who cares for her. She also has a nurse during the day. As the disease progresses, Angelina will need 24/7 care.

In early 2022, Angelina had slowed down a lot but was still able to walk and talk slowly. Her dementia was more progressive, her seizures were more frequent, and she’d be in her wheelchair most of the day. Angelina was fed 98% by her feeding tube. She started a biweekly experimental treatment that you can read more about below.

Angelina has been receiving biweekly Enzyme replacement therapy infusions of an experimental medication since 2022. This is possible through compassionate use that was approved in Australia, for which her family is grateful. It will take some time, potentially two years, to know the impact of this therapy and if her symptoms will slow down.

Now, September 2023, Ange regularly stays for respite and critical care at the new Many Adolescent and Young Adult Hospice – Australia’s first dedicated service for young people with life-limiting illness.

To see how Angelina Lati is doing, please visit @LaforaInitiative on social media: Facebook;  Instagram; and TikTok.

Watch Niki’s latest update, filmed with the Childhood Dementia Initiative, here.

Media & Awareness

Niki is also advocating for Angelina in Australia through the Childhood Dementia Initiative.