Jacquelyn Hedrick wrote -
During the course of my three years at Sanderson, I have had the absolute privilege of getting to know the Lowden Family through my work in Sanderson's AU-IV Program running PALS and Project UNIFY.
I first met Eric Lowden in September of 2013. Eric loves LEGOS, hockey, classic rock (particularly Queen), medieval-themed movies, dragons, and PALS! He is always flirting with his 'girlfriends' despite efforts to curb his enthusiasm. He has a fantastic sense of humor - he always keeps us laughing. McKenna, Eric's sister, joined us at Sanderson this fall. She is the biggest dog-lover you will ever meet, her service dog Bella is the love of her life! She really enjoys listening to Taylor Swift and reading about dogs as well.
Both Eric and McKenna are affected by Batten disease.
I can detail what it is to you in clinical terms granted to me by the Batten Disease Support and Research Association, the organization we are fundraising for, but this description does not suffice to explain the extent of what Batten disease does or is. With that being said, I also can't accurately explain it to you in my own words either. Though I have spent countless hours with Eric, and now his sister McKenna, my experience pales to that of themselves or their incredible parents, Danielle and Chris, or their sisters, Tori and Sophie. However, I am grateful to act as a liaison between their experience, my own, and the fantastic community of friends that is Sanderson High School.
Batten disease is one of fifty lysosomal storage disorders in which genetic mutations cause difficulty with the disposal of cellular waste. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids. Batten disease is an extremely rare autosomal recessive disorder that causes progressive neurodegenerative impairment characterized by blindness, seizures, personality and behavior changes, dementia, loss of motor skills and the ability to walk, talk, and communicate.
Batten disease is further categorized by the particular gene it affects. Eric and McKenna are affected by the CLN3 form, or Juvenile Onset Batten Disease.
Children affected by CLN3 develop normally for the first few years of life. The first signs of Batten present themselves as gradual loss of vision between the ages of four and seven. Vision will be completely lost within six to twelve months. By late elementary school age, affected children will demonstrate difficulty concentrating, retaining short-term memories, and learning.
The next stage of the disease begins with the onset of epileptic seizures (typically around ten years of age). Seizures can be controlled with medication but they will always recur. They typically begin as motor seizures but the type and pattern will evolve with the progression of the disease.
During the teenage years, those affected by Batten disease will become gradually more unstable on their feet. They will become repetitive in their speech and difficult to understand at times. Some people affected by Batten disease will see, hear, and feel things that aren’t real. As Batten progresses, the teenagers will become increasingly more dependent. It is important to note that the progression of Batten disease is extremely variable even for members of the same family. Ability varies daily as well. Death typically occurs between fifteen and thirty-five years of age.
Because Batten disease affects only one out of every 12,500 people, the push for funding is minimal. Its status as a rare disease puts Batten disease low on the priority pole for research and development. Because of this, organizations like the Batten Disease Support and Research Association step in to bridge the gap.
"BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action ... BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease."
When I first met Eric, I had never heard of Batten disease. Eric was just Eric, and it wasn't until much later in my freshman year that I would discover what a nightmare it was. I wouldn't truly comprehend it until I met McKenna at the beginning of this year either. Eric has not progressed as far as McKenna despite his being older. He is still able to walk, talk, and communicate very well, while McKenna has declined in these capacities particularly over the last few months.
This has been incredibly difficult to come to terms with for those of us close to Eric and McKenna at school. To even imagine what it has been like for their family is next to impossible. But, I can speak for everyone when I say it has been one of the greatest joys of my life to know them and attempt to make their days at Sanderson joyful, active, and something to look forward to. They do the same for myself, and I am grateful.
Over the past year, PALS Club has raised almost $4000 for the Autism Society of NC and the Special Olympics of Wake County. Fundraising for Batten disease has always been in the back of my mind, and upon doing research over the past few weeks, I was made aware of what a need there was. While ASNC and SONC are fantastic organizations, they do not lack in attention or funds. Batten disease is desperately in need of both. No one deserves to live with Batten disease. No one deserves to have their family live through this. No one deserves to watch their children, their siblings, or their friends suffer from it. Especially when a cure or treatment could be out there waiting to be discovered. I feel compelled to do whatever it is I can to assist in the discovery of that cure or treatment, to advocate for rare disease research, and to support the Lowdens and other families through this journey. I hope that after reading this you feel similarly. I ask you to donate whatever you can or take some time out of your day to spread the word about our fundraiser.
Those who know Eric and McKenna and their family love them with all their hearts. I am so excited to begin Sanderson's fight against Batten disease and I am endlessly thankful for any part you can take in it.
Thank you for reading.
(919.605.7093 - firstname.lastname@example.org)