Hugh Kiser

Hugh Fubao Kiser (a.k.a. Bao Bao), age 20, of Chicago, Illinois and Saugatuck, Michigan, passed away peacefully on August 14, 2024 at 8:19 pm, surrounded by those who loved him, from complications resulting from Duchenne Muscular Dystrophy(“DMD”), a degenerative muscle disease that arises from a genetic mutation and affects mostly males. Despite facing many challenges, Hugh’s spirit remained unbroken, and his life was a testament to courage, perseverance, and love.

Hugh is survived by his parents, Dr. Michael L. and Livia A. Kiser, brother Alexander McCammon (Jennifer Mao-Jones), sister Ellen McCammon (Harsha Tolappa), brother Stephen McCammon and sister Liana Kiser, as well as many beloved uncles and aunts (Dr. David J. Kiser and Rebecca Sullivan, Joseph Ludwinski, Roger and Hattie Ludwinski, Cliff Marston, Matthew Ludwinski) and numerous cousins and friends (Devin Sullivan-Lee, Sandra Fisher and many others). Hugh was also blessed with the companionship and loyalty of his mobility service dog, Sully.

Hugh was a citizen of the world and touched many people during his short life. Born in Huainan City in Anhui Province, China, Hugh’s early life was marked by hardship. It is believed that his birth parents became aware of his DMD prior to his birth because he was left at the gates of the orphanage almost immediately after he was born (the umbilical cord was still attached). He was dubbed “Wei Fubao” (“伟福宝) at the orphanage and was one of the few children there to attend public school because he had no visible physical disability at that time. The orphanage workers were unaware of his DMD, which had yet to be diagnosed. At the orphanage, Hugh lived under impoverished conditions. The orphanage lacked indoor plumbing, heat, and other basic comforts, and the children slept six to a bed – three children at one end, three at the other. While there, Hugh received support from a family in the Netherlands who knew him as “Jasper” – they sent money to an NGO so that Hugh could have milk and eggs to supplement his meager diet.

When Hugh was eight years old, he was adopted by his parents and moved to the United States to live in Downers Grove, Illinois. He was diagnosed with DMD during a routine examination at the University of Chicago adoption clinic.

Hugh came to the United States not ever having seen such modern conveniences as dishwashers or washing machines. Nor had he ever lived in a family home environment. Initially he did not understand that he was not supposed to walk into neighbors’ homes without knocking first! But he quickly acclimated to family life. His resilience was evident as he embarked on his new life with his loving family. Hugh embraced family life wholeheartedly, and his deep love for his parents and his siblings was at the very core of his being. He also deeply loved his grandparents and was very attentive to them.

Hugh was a bright light to all who knew him. He knew how to speak from his own soul and to the souls of others. He had a special ability to connect deeply with other people, even those he had only known for a short time. Hugh found joy in many artistic expressions, particularly music and poetry. He was a wonderful photographer, especially of animals. He played the mandolin and the ukelele and enjoyed listening to all kinds of music.

Along with his sister Liana, Hugh earned his high school diploma from Lincoln Park High School in Lincoln Park, Chicago, Illinois in 2023.

Hugh’s passions extended to helping others. Hugh would have liked to have had a career as a therapist and to have trained therapy dogs. Hugh very much wanted to attend college but was unable to do so because of the constant fatigue and pain he suffered from his DMD. Hugh read books and played Wordle nearly every day. He also publicly performed with other musicians on the streets of Saugatuck.

Hugh had an outsized impact despite being unable to pursue his educational and professional aspirations. Starting from a young age, Hugh was a leader in his community. He served on the Lurie Kids Advisory Board for many years. He served on the Chicago Mayor’s student advisory council during Lori Lightfoot’s administration. He was elected to student council at Oscar Meyer Elementary, which he attended after he and his parents moved to Lincoln Park in 2015.

Before the progression of Hugh’s DMD limited his ability to travel long distances, he was a world traveler. He went to Disneyland, Disney World, Wisconsin, Vermont, Michigan, Arizona, Los Angeles, Universal Studios, New York City, Key West, the Bahamas, Boston, Indiana and New Hampshire, among other places. He returned to China in 2015 when his parents adopted his sister Liana. He traveled with his parents to Dongguan, Shanghai, Guangzhou and back to his orphanage in Huainan City.

Hugh had a strong sense of justice. While visiting his prior orphanage in Huainan city, he bravely confronted the orphanage director about the abuse he had suffered at the orphanage, as well as the fact that the orphanage director had the newest iPhone and a very nice watch, yet the children did not have enough to eat. The orphanage director, plainly taken aback, apologized for the abuse that Hugh had suffered.

As his DMD progressed, Hugh lost the ability to walk and began using a motorized wheelchair. In 2016, Sully, a 90 lb. labrador/chow mix and trained mobility service dog, joined Hugh’s family. Sully helped Hugh with such things as picking up his phone when he dropped it, fetching items for Hugh, helping Hugh to undress and other tasks that became increasingly difficult for Hugh as he lost strength in his body. Sully loved Hugh. Sully went everywhere with Hugh. Hugh spent the summer with Sully and his sister Liana, and the three of them had a lot of fun in and around Saugatuck. Sully was by Hugh’s side when Hugh passed away.

Hugh was predeceased this year by his beloved grandmother, Dr. Penelope Ludwinski. His other grandparents, Donald J and Maxine Kiser and Mitchell Ludwinski, also predeceased him.

A memorial service to honor Hugh’s life and the life of his grandmother, Dr. Ludwinski, will be held October 26, 2024 at 10:30 am in the chapel at the Church of Jesus Christ of Latter-Day Saints located at 822 N. Clark Street, Chicago, Illinois 60610 on with Bishop Brian Mickelsen presiding. The burial will be private.

Memorial donations may be made to Parent Project Muscular Dystrophy, 1012 14th NW, Suite 500

Washington, D.C. 20005, or online (https://www.parentprojectmd.org/) or to Mid America Service Dog Foundation (7630 S. County Line Road, Unit 3B, Burr Ridge, IL 60527 or online (https://midamericadogsfoundation.org/). Donations to any animal shelter would also honor Hugh’s memory because he loved animals so much. Finally, the family wishes to extend their heartfelt gratitude to Hugh’s caregivers, Veronica Mares, Maria Guereca, Safya Bellachia, Amy Mares, and Hugh’s uncle, Joe Ludwinski, all of whom cared for him with so much love and allowed him to maintain his dignity and live largely independently in the last months of his life.