A Family’s Loss Gives Support to College Students

By Mary Casey-Sturk

Alyson Von Handorf passed away at the young age of 32 in 2022. Alyson, Aly, as she was known, was born with a rare disease called Sanfilippo Syndrome. Also known as MPS III,  it is a mucopolysaccharide disease with no cure and no approved treatment currently available. One in 70,000 newborns is born with MPS III.

Aly lived her entire life with MPS III, and she benefited from many dedicated individuals who serve people with disabilities, including medical staff and teachers. Her family continues to remember Aly and has created a non-profit organization (alyspurpose.com).  “Our mission is to give back to the community of people who made a difference in Aly’s life. We hope our scholarship helps a student who has a passion for serving the special needs population.”

Partnering with Northern Kentucky University, it has established a scholarship in honor of Aly that goes to future teachers who will focus on Special Education.  “Aly’s Purpose – The Alyson Rae Von Handorf Scholarship” enables Aly’s family to continue to change the lives of others while preserving her memory and spirit forever.  

Aly’s father, Jeff E. Von Handorf, her mother Mary Beiting, and sister Becky are all graduates of NKU. 

About Aly

I sat down with her parents on a Thursday afternoon to learn more about their daughter and discuss Von Handorf’s book, Aly’s Purpose. As the cover states, “this is story about a special little girl who could not overcome the odds of being born with a genetic condition yet was able to impact the lives of all who knew her.” 

Looking around their dining room, at the family pictures on the walls and the love in her parents’ voices, there was no doubt that Aly left an impact. 

Aly was born in 1989 with Sanfilippo Syndrome. She survived two bone marrow transplants at age 2-1/2 and 3-1/2. As a result, she outlived the normal life expectancy for children with this disease.  She became non-verbal early on, and there were physical limitations; however, Aly, with the support of her sisters and her parents (an educator and a nurse), grew into a social butterfly. She enjoyed many activities, including horse programs at Milestones, Special Olympics bowling, time at the ocean, hanging out on the porch, swimming, and watching television. Disney movies and The Berenstain Bears landed high on her list. Von Handorf, an active cyclist, took Aly on adventures on his bike with a wheelchair on the front, and he penned a book sharing a cross-country journey he took and raised $5,000 for Sanfilippo Syndrome.

Beiting concurred on Aly’s love of socializing, “She loved people and going out places. She liked going to her sister’s sporting events and Active Day in Fort Thomas.” 

Recent Book

Aly’s Purpose is a deeply personal book for Von Handorf. 

“Her life was filled with the suffering and heartbreak that all MPS kids and their families experience in their lives, yet she had a smile that could light up a room. She had a certain sparkle in her eye. As the effects of the disease began taking their toll on Aly later in her life, one could see that sparkle begin to fade. Eventually resulting in her succumbing to Sanfilippo and its hold on her life.” 

He continues, “Following her passing, writing about her became my way of dealing with my grieving. She was my “sweetie pie”. As time went on, I saw my collections of writings as the possible basis for a book. The first half of the book chronicles her life and the good times and bad times she and our family experienced throughout her life. The second half of the book chronicles my grieving process, dealing with the loss of my daughter.”

“I’m honest in the book about the bad things and the amazing things”.

“I wrote and published the book thinking that if it could possibly help someone or some family facing the same circumstances that Aly and our family faced. I felt that if it helped one person, all the work and tears shed while writing the book would be worth it.”

I was honored to be given a copy of the book and two school photos of Aly, they are on my desk now. A reminder of a young lady and her family who, through their support of future Special Education Teachers, will continue to impact generations.

Proceeds from the book benefit the scholarship at NKU and the family also hosts a fundraiser every other year for the cause. The next one will be in 2027. 

For a copy of the book, contact Jeff E. Von Handorf at woodyvh1@gmail.com.