Ashlyn Lee

Ashlyn Lee was a high school soccer player who was known for her kind and bright spirit. After noticing changes to her personality and lifestyle during her life, and after she had sustained 4 known concussions, her family decided to donate her brain to the BU CTE Center for answers after her passing at the age of 16. We thank the Lee family for their generous donation and commitment to our research.

Read Ashlyn’s story below.

Trigger Warning: This story mentions suicide.

Ashlyn Lee was known for her kindness and the bright energy she always radiated. She was the type of person who was always ready with a compliment and was friendly and outgoing. “She had this beautiful radiant energy about her that was so filled with empathy and compassion for others,” her parents, Brian and Shannon, said. “She saw the good in everyone and everything.”

Ashlyn loved nature, especially rocks, animals, plants, water, the sunrise and sunset. Her favorite color was yellow, and she lived by her motto: live life in warm yellows. Her favorite flowers were sunflowers, because she loved how they would always turn to find the light.

Ashlyn was very active and tried dance, track and field, and tennis, but soccer was her biggest passion; she began playing when she was only three years old. She called the soccer field one of her happy places. Being from Blaine, Minnesota, Ashlyn and her sister, Britney, who were best friends and inseparable, grew up near one of the largest soccer complexes in the northern hemisphere, which meant the Lee family spent many days a week, year-round, at practices, games, and tournaments.

Growing up, she was talkative and fearless. She would sing solos and was the lead of the school play. After sustaining concussions, particularly her second and third ones in seventh and eighth grade, and being diagnosed with celiac disease, her family said she developed a great deal of anxiety and went into a shell, struggling to even talk to people she didn’t know.

She sustained four concussions during her lifetime. “Physically, mentally, and emotionally she never really seemed to recover from this,” her parents said. One of the consequences was “brain fog” which they say she struggled with quite a bit. She had a hard time concentrating and school became difficult. In addition, she spent a lot of time attending appointments, including, OT, PT, neuro-ophthalmology, concussion clinic, and more. “She was someone who never complained but you could feel the toll it was taking on her,” they said. “You could feel how tired she was of everything.”

During her junior year of high school, her boyfriend, Sam, died by suicide after losing two of his good friends to suicide months earlier. “She had been trying her best for so long but when this happened, she just couldn’t do it anymore,” they said. Ashlyn took her own life six weeks later.

Her family knew that she hadn’t wanted to be a burden to anyone, and she had felt she was because she needed special accommodations at school due to the lingering effects of her concussions. People didn’t always understand what she was going through because it was an “invisible injury.” Knowing that Ashlyn wanted to be an organ donor, her parents knew she would want to donate her brain and help support research. “[It] was such an easy decision for us because that’s the way she lived her life. She literally would have given the shirt off her back to anybody.”

Brian and Shannon had heard of CTE research before her death, but, if they hadn’t, they said they wouldn’t have thought to ask about brain donation. “The more we talk about this stuff, the more we bring these stories to light, the more people know this research exists and are willing to contribute should the situation arise,” they said.

They donated Ashlyn’s brain to the UNITE Brain Bank at the BU CTE Center. Though she was ultimately not diagnosed with CTE, there were clear changes in her brain as a result of the concussions she suffered, including prominent perivascular hemosiderin-laden macrophages in the subcortical white matter in multiple lobes and a small cavum septum pellucidum, as well as evidence of some minor bleeding in the brain at some point.

“After we got the findings, I felt that in death she got the validation that she deserved. I felt it was the proof to say to people who maybe thought she was ‘faking it’ that she indeed did have something abnormal going on in her brain,” they said. “To hear and see the changes that had happened in her brain was shocking. In a way it felt like this sense of relief to have the proof to say that her struggles were warranted.”

After Ashlyn’s passing, Shannon became an advocate for mental health and suicide prevention and has given many talks. Their family continues to spread the positivity that Ashlyn was known for on their Facebook page, Ashlyn’s Ripple. 

“When Ashlyn was here, she was very intentional about doing things to make people feel good or to brighten their day. She would make up small ‘boxes of sunshine’ to give to people she knew were having a hard time,” they said. “She would take notice and tell people, even strangers, when she liked their outfit or their makeup or if she felt they had a good ‘vibe’ because she knew the power of kindness and how one small act could make a tremendous difference to someone.” This is the message and legacy they hope to continue, and many people have shared their own stories of Ashlyn on the page.

“Knowing the struggles Ashlyn had with her concussions, and the difficulties we had following through the channels to get her the help she needed, we just wish it could have been easier. It’s hard to have an ‘injury’ that people can’t see so whatever we can do to better this for other people we are all for.”

They also want parents to be cautious and aware of the risks that come with sports. “It’s a hard thing. Ultimately, we still need to live our lives and have fun, but we should do that with a level of understanding and caution of the risks,” they said. “I think hearing more stories like the ones you may be highlighting will be eye opening and create pause for discussion on the choices parents make for their kids. Knowledge is power so just continuing to share the knowledge that is learned is important.”

In addition to their Facebook page and advocacy for mental health and suicide prevention, the Lee family also keeps Ashlyn’s memory alive in other ways. Visiting the Minnesota State Fair is a tradition for their family every year, and it was one that Ashlyn loved. After her passing, they bought a yellow bench in her honor and were happy to find it had been placed outside her favorite place at the fair, the same place they would always end their day: at the horticulture building where the sunflowers are.

Each year, they still purchase a ticket for Ashlyn and they give it to a stranger on the way in that gives them the “good vibes” that she always used to look out for.

What might these good vibes look like? This year’s recipient of Ashlyn’s honorary ticket was a man they encountered on the bus ride to the fair. He was wearing a yellow basketball jersey and had a noticeable sunflower tattoo.

“She is not here to continue to share her bright light with those around her, but we are here,” Brian and Shannon said. “And our mission will always be to continue spreading her light into the world.”

Ashlyn’s diagnosis was made by Dr. Ann McKee at the BU CTE Center. If you would like to support the BU CTE Center’s research and help give more families life-changing diagnoses, you can donate here.

If you or a loved one are interested in brain donation, please view our Frequently Asked Questions (FAQs) and brain donation brochures for more information.

You can visit our Resources page to find resources for anyone struggling with suspected CTE symptoms. If you or someone you know is having suicidal thoughts, you can reach the 988 Suicide & Crisis Lifeline by calling 988 or 1-800-273-TALK[8255].

This story was written by Amanda V. Cabral at the BU CTE Center. If you are interested in having a donor story written for your loved one, please reach out to her at avcabral@bu.edu.