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Laney’s Story

On the day Delaney Emily MacLeod “Laney” was born, February 25, 2004, her mother wrote the following in her pregnancy journal: “I was so happy that she was healthy that I didn’t care about the pain, I just kept thinking about her in my arms. One hour later she was nursing, and it was as if she was an old soul coming back to earth from the heavens, she ate so well and so naturally, we all watched her in amazement. My family was complete and our lives together --just starting. We loved her the moment we laid eyes on her and even before that.” 

Laney was born with the softest red hair that would eventually turn blonde, the most beautiful blue eyes, and perfectly heart-shaped lips. The moment she was born, she made our lives whole and was gifted with self-confidence, a fierce determination, and an enormous loving and giving heart. We called her our little “pistol.” 

As a toddler, she wore her mother’s high-heals and lipstick, refused to wear her older sister Devyn’s hand-me-downs, and showed us that she was ready to take on the world, telling us “I want a lot of things!” when we promised to give her something after she was potty-trained.  

By four years old, she proudly walked with her big sister through hotels handling her pink roller suitcase during our family vacations, took charge of her own shopping purchases, and led the family as if she was a little mommy. Everyone whoever met Laney felt her giving heart and passion for life. As a child, she loved puzzles, origami, tap dancing, art projects with her Nene, various outings with her Wedo, and visiting her Aunt Dobid and relatives in Southern California. Most of all, she loved her family, friends, and our family of cats and dogs which she adored every day of her life.

Growing up, Laney shared her mother’s love of shopping and television, binge watching shows like All My Children, Downton Abby, and Grey’s Anatomy. After watching her favorite Christmas movie, “The Heart of Christmas,” she quickly decided that her path through life would be to become a pediatric oncologist and save children from cancer. She bought anatomy books and had hospital birthday parties, turning her bedroom and dance studio into an improvised hospital room where she and her friends pretended to treat our golden retrievers with an IV drip she connected to her pink coatrack with a side table equipped with bandages and face masks. She made hospital IDs for her and her friends and, while she eventually obtained a real hospital badge as a licensed phlebotomist and intern, she never had the chance to add initials MD after her name given her sudden and unexpected death to epilepsy.

As a teenager and young adult, Laney shared her dad's love of driving, cooking, and endless number of furniture and wood-making projects which they planned and constructed together. Laney learned to make the family recipes from her Nene and cooked them during the holidays with her dad. They later explored new recipes, often cooking via face-time together when she was away at college. Laney loved traveling, planning every detail of our family trips to Hawaii and Europe with her dad, figuring out how to get the luggage in the cars, specifically requesting which side of the resort she wanted, and navigating us through airports and train stations while planning the following year's trip to embark upon.

Laney was not only incredibly smart, when she walked into a room, she would notice everything and was a brilliant problem solver. She was loving, thoughtful and creative and showed compassion to everyone she met. Her kindergarten teacher once told us that Laney was so exceptional that Laney could “teach the class.” But by third grade, we noticed that her reading was not keeping up to grade level and she was becoming increasingly frustrated at school. That year, she was diagnosed with dyslexia, and she was taught to learn to read in a new way through the Barton method which helped her greatly.

 

With dyslexia, Laney would forever have difficulty reading, but the Barton method gave her the tools to work around this. It meant that she had to work much harder than her classmates to do the same assignments, but she was so driven to become a doctor, that she not only succeeded she eventually graduated high school in three years with a 4.5 GPA. During the Covid pandemic, she interned with John Muir Hospital and after becoming a student-supervisor, received a scholarship towards her college studies. She was accepted to UC Berkeley and a host of other highly ranked universities. Following her Grey’s Anatomy Seattle based dreams, she chose to attend the University of Washington (UW) in Seattle while working at Diablo Clinical Research in Walnut Creek, CA when she came home during the Winter and Summer breaks.

When Laney was two months shy of her 17th birthday and prior to her acceptance into UW, Laney had her first epileptic seizure. 911 was called and the paramedics took her to the emergency room. She was sent home with an all clear. A month later, she had a second seizure which led to her epilepsy diagnosis. The neurologist prescribed her an Anti-Epilepsy Drug and we were told the drug would stop the seizures and that she would go on to lead a normal productive life, with her dream of becoming a doctor still intact. Laney was determined to achieve her dreams, and as part of that did not want us to tell anyone of her epilepsy diagnosis. We respected her wishes.

At UW, Laney pursued her dreams with incredible passion. A few weeks after turning 18, she obtained her Phlebotomy license and went to work drawing blood from patients for LabCorp at Swedish Hospital in Seattle. She relayed stories of patients looking with surprise given her age. She also obtained a clinical research internship combining human tissue samples with animal samples for cardio-thoracic and lung transplant research projects. She built relationships with doctors and was excited to observe two open heart surgery procedures. This experience further drove her passion to become a doctor herself one day. She relayed in one of her final journal entries, that becoming a doctor “is all I have ever wanted to be.”

In her sophomore year at UW, she was accepted into the highly competitive Medical Laboratory Sciences (MLS) program and elected to pursue her minor in microbiology after she completed the majority of her pre-med classes. Both would provide her with valuable clinical experience for her medical school application. Dyslexia forced Laney to engage in an enormous extra work to digest the information from her classes. She would typically record each lecture, and then would painstakingly transcribe it into a format that she could process. After her death, we found her spiral notebooks with perfect writing and diagrams that filled dozens of volumes. The effort that she had to put into these classes to overcome her disability was astounding. But worse, she was struggling with epilepsy during this time which further compromised her.  She persevered and worked hard to maintain her grades and was well on her way to achieving her life dream of becoming a doctor. She had no idea her life was endanger during this time.   

​For nearly two years, we nearly forgot that she even had epilepsy until she began having breakthrough seizures during her Sophomore year in college. Her medication was switched to a new Anti-Epilepsy Drug. The doctors provided positive assurances that everything would be fine if she took her medication as prescribed. It was fine until she began to have several nocturnal tonic-clonic breakthrough seizures. Her doctor elected to slowly increase her dosage to the appropriate therapeutic level and advised that if this did not work, she would have to try another drug.  Laney was focused on finishing her final quarter of the year and took her medications as prescribed.

​In the early morning of April 28, 2024, Laney suffered a seizure that resulted in what the medical examiner explained to us was “Sudden Unexpected Death in Epilepsy” (SUDEP). With a subdued but professional King County paramedic informing us that our daughter was dead, our family was completely destroyed. This was the first time, any of us had been advised that Laney’s seizures carried with them a risk of death.

​After three years of treating her epilepsy, the first time any of us heard the term SUDEP was from the King County Medical Examiner’s office. Several frantic Google searches led us down a rabbit hole that was for some reason, the hidden secret of epilepsy. We would read dozens of anecdotes with remarkably similar stories to Laney’s, in which patients and families had no idea about SUDEP. Many doctors, including the several that treated Laney’s epilepsy, elected to intentionally withhold any information about SUDEP from their patients and family members. We were shocked. 

​Laney followed her doctor's treatment instructions but was never advised of SUDEP or its risk factors. We believe this prevented her from making informed decisions relevant to her treatment and unsupervised sleeping arrangements while in college. The decision to hide the risk of death associated with epilepsy, and Laney's increased risk with every nocturnal seizure she experienced, robbed us of any chance to protect Laney from this horrific disease.

Laney somehow managed to capture most of the best from each of us. She was a beautiful tall Taylor Swift-like blond bombshell who had her mother’s drive and tenacity and her father’s curiosity and appreciation for the finer things in life. She excelled at everything she attempted. From overcoming dyslexia, to building her own furniture, growing her own plants, making macramé and striving to becoming a professional chef who learned to cook all the family recipes and restaurant style meals. She planned to attend culinary academy, travel to Scotland and Europe, work as a research coordinator during her two-year gap year after graduating from UW, attend medical school, get married and have four children. All of these dreams will never be achieved and we have lost our beautiful, brilliant and driven daughter who was prevented from accomplishing her dreams of becoming a doctor and saving children from cancer.

While the world has lost all that she was and was going to accomplish, The Laney MacLeod Foundation for Epilepsy Research will keep her dreams alive by supporting medical professionals and philanthropic organizations dedicated to the treatment of epilepsy and the mitigation of SUDEP risk factors, with the goal of eliminating the risks of SUDEP entirely one day. 

    ©2024 The Laney MacLeod Foundation for Epilepsy Research

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