A parent’s resolve is rarely tested as much as that moment when they receive the news their beloved child has just been diagnosed with a rare disease that is highly likely to bring a premature death. A few years ago, Christian Lundin’s resolve was so tested.
In early 2016, the diagnosis of Lundin’s then 7-year-old son came almost by accident, as the result of a routine eye exam in school. That routine eye exam revealed something that warranted a visit with an eye specialist who knew about Batten disease. That specialist then sent the family to another specialist.
The Lundin family found themselves in a room with several people, anxious to learn what these specialists had seen in their son that would be cause for such an onslaught of medical attention. Attention that Christian would later describe as being “like a flash of lightning out of a clear blue sky”. The specialist explained their son had Batten disease. He then ushered the family into another room filled with even more people and there, the doctors finally explained more about Batten disease.
According to Beyond Batten Disease Foundation’s website, Batten disease is one of a group of disorders known as neuronal ceroid lipofuscinoses (NCLs). There are many different forms of Batten, differing based on when symptoms first appear. To date, over 400 different errors (mutations) in 13 different genes have been attributed to various forms of Batten, and all affect the nervous system, causing increasing seizures, movement disorders, altered thought and cognitive decline. Children diagnosed with Batten experience vision loss. The CLN3 form of Batten, also known as juvenile Batten, is ultra-rare, inherited, and fatal, typically leading to a child’s death in the late teens or early 20s.
Christian recalls feeling weak and depressed. Rather than just falling down, he said it felt like he was falling from the top floor of a skyscraper. He said “You’re always supposed to have hope for the future.” But in an instant, that hope was dashed by the news their young son had a rare disease that would likely eventually claim his life.
Christian knew there would be suffering for his son. In the immediate crisis, Christian said he found it difficult to even get out of bed in the morning, knowing what his son would be facing in the weeks, months and years ahead. Soon, Christian realized leading his family back to some semblance of hope would include finding acceptance and then finding strategies to live this new life.
He dove into research about Batten disease and reached out to the clinical team working with another gene therapy trial. He would soon embark on some international travel, first to Germany and then to Ohio, to learn more about the disease and the hope tied to any clinical trials. He took additional trips to Finland and Barcelona, Spain in his quest to develop a team to research treatment for his son’s Batten variant.
Christian realized he would need to dive head-first into the world of fundraising to be able to support clinical trials that would possibly continue to bring hope to children with Batten disease. As he explained, fundraising in Sweden is vastly different to fundraising in America, due to cultural differences. In Sweden, much of healthcare is government funded, so the thought that additional funding is needed to support medical care feels very foreign. As challenging as funding rare disease treatment in America can be, the degree of difficulty is compounded due to a limited fundraising awareness culture in Sweden.
This didn’t stop Christian. He said he knew he had to go “all in” and be willing to ask people for help, despite cultural norms that often don’t support fundraising for medical research. Together with his wife, they started the Fight Batten Disease Foundation in the summer of 2016. They raised $1.3 million dollars to help fund a clinical trial that has potential to change the lives of children with Batten disease.
Christian describes his family as living two separate lives, the one before the diagnosis and the one after the diagnosis. The diagnosis altered the family’s hope but it didn’t rob them from forging an ever-tighter bond, learning to life live in the moments. Christian says he is more present in every day life, more in tune with life and with creating new strategies for living.
In a quiet moment, Christian shared “For us, every day, every year, counts in a way many people can’t even comprehend.”
For many parents of children impacted by rare diseases, the diagnosis is incomprehensible. It can feel like all hope is lost. For Christian Lundin, he found a way to restore some hope to himself and his family. He found a way to spread that hope to other Batten disease families, by fundraising to launch a clinical trial. As Christian said “It feels good to know that this clinical trial will enable kids and their parents to have hope and maybe a chance of a better life.” It is this spirit of generosity, this focus on providing hope amidst the darkest hour that makes Christian Lundin a Rare Disease Difference Maker®.