Fighting for our boys

Nicholas Purschke stands in front of the Annual Run for ALD sign. Photo courtesy of the Purschke family.

Staring out his window across the busy city of Minneapolis, 12-year-old, Nicholas Purschke was laying in his hospital bed and dreaming of the day he could be a normal kid again. Now a sophomore at St. Louis University High School (SLUH), he is thriving. For as long as he can remember, he has lived with a rare genetic disease called Adrenoleukodystrophy (ALD). According to the Stop ALD Foundation, this disease affects one in 18,000 people. 

Nicholas inherited the disease from his maternal grandfather. His mother does not have the disease, but she is a carrier like some other women. He said females carry the genetic disease from generation to generation and may experience slight symptoms, but will almost never have any life-threatening symptoms. 

Nicholas said ALD is an x-linked genetic disease that directly affects the brain. It destroys the myelin which covers the nerves in the brain. So when it progresses too far, boys who have it can lose motor control, eyesight and hearing.

The idea for Knockout ALD was born when Nicholas was going through his bone marrow transplant. His parents took his idea and made it come to life. Julie Purschke, Nicholas’s mother, started the nonprofit in 2018 as a way to spread awareness of the disease and raise funding for ALD research.

“The transplant was such a huge ordeal that was life-threatening,” Julie said. “[My husband, Dave, and I] told him that when we get out of this we are going to do this in his honor. So we decided that we needed to start a run for ALD because [Nicholas] has always been a runner.” 

Knockout ALD’s primary focus is to raise awareness about the disease. Julie said it is important to have newborns screened for ALD, because the sooner the disease is found and monitored, the higher the chances are of the boy surviving. She also added that right now only 17 states screen newborns for ALD, so she is trying to get young babies in Missouri tested as soon as possible.

When he was born, Nicholas’s parents knew he had a 50% chance of inheriting the disease. Upon his newborn screening, he was officially diagnosed with ALD. The cycle of visiting hospitals and meeting specialists to track and treat Nicholas’s disease had started. 

“Once a year, [my family and I] went up to Baltimore, MD to visit John Hopkins Hospital where specialists in my disease [are] located,” Nicholas said. “I had an MRI scan done yearly to check up on my brain and make sure everything was okay.” 

When Nicholas was 10 years old, he received news after his check-up that the disease had begun progressing in his brain. About a year and a half later, he was admitted to the University of Minnesota Hospital located in Minneapolis, MN. Soon after entry, Nicholas was administered chemotherapy for about a week. 

“That week was hell,” Nicholas said. “I received the same amount of chemotherapy in a week that a cancer patient would have received in three months. It destroyed my immune system so that I was able to rebuild a stronger immune system with the help of a bone marrow transplant.”

This transplant saved his life, and Nicholas often refers to it as his “rebirth day.” The bone marrow transplant gave him the opportunity to have a normal life and it also stopped the progression of the disease. Nicholas continues to have annual MRI scans to check up on the health of his brain, but he says that he is generally “normal” now.

The name for the charity, Knockout ALD,  originated from Nicholas’s love for the Rocky movies. He said he was inspired by the movies to stay strong and to keep persevering through hard times. The main event the charity hosts is a run for ALD in November. They also host other smaller fundraisers through SLUH and their local church, Christ Prince of Peace. This year, the run was canceled due to COVID-19. Instead, participants can run in their virtual race.

“The first year [we hosted the run], we raised about $11,000. Each year we continue to raise more. This year, we are at about $25,000 already,” said Julie. “So far we have donated around $43,000, and after this race, we will have donated around $68,000.”

All of the money raised goes to the University of Minnesota, where some ALD experts are located. The Purschkes are excited to know that their donations have helped experts at the University of Minnesota find a new way to treat ALD without a bone marrow transplant. 

The Purschkes described race day as a very emotional experience because of the people that show up to support the charity. Some families who have been personally affected by ALD come to support the fight. Nicholas said he feels lucky to be as healthy as he is now, especially when meeting the families of kids who have suffered disabilities or have passed due to the disease. 

“Race day is the one day that I am truly reminded of my disease,” Nicholas said. “When I see other boys with ALD [who] weren’t as lucky as me [to] come to the race, I get upset. It makes me angry that I was fortunate enough to make a recovery when others did not. When I see everyone come together to support the cause, it brings me joy and also gives me hope for the future.”

The Purschkes want Nicholas’s story to bring others hope. They want others to use their experience as inspiration to keep a positive outlook even during the toughest times. Those who are interested in supporting the fight against ALD can donate money to the nonprofit along with signing up to be a bone marrow donor and possibly saving the life of another boy with ALD. 

Website: knockoutald.com

Instagram: @knockoutald