Nicholas Carey Allen

Nicholas Carey Allen was born on March 31, 1981 to parents, Alexander “Sandy” and Wendy Allen in Mankato, MN. From the beginning, it was evident to all who knew him, cared for him or learned from him, that he was a special gift from God. Throughout his 31 years Nick taught PCA’s, doctors, nurses, hospital staff and administration, nursing classes and elementary and special education teachers the meaning of unconditional love. He taught everyone the importance of advocating for those who are disabled and how to be his voice when he needed to be understood.
His brothers, Nathan and Benjamin came second and third, teaching him what needed to come next developmentally. When he no longer could keep up, they defended him against harsh words and showed him the true meaning of brotherly love. The addition of sisters-in-law Cassie and Emily added the joy of seeing more girls he could love. And with Penelope’s birth in 2011,Cordelia’s in 2013 and Marjorie’s in 2015 he became the famous “Uncle Nick”.
Nick remained at home throughout his life with the loving care and attention of his family and his PCA’s- referred to as Nick’s Angels. They became his “girlfriends” whom he adored and greeted with smiles and kisses. In turn, they cherished him even to the point of sleeping on hospital floors so they wouldn’t have to leave him when he was ill. He recognized their beauty from their hair styles and could pick out a blonde pony tail from a distance even with poor eyesight. The joy each and every one of them brought to him elicited hours of smiles, giggles and belly laughs. They became his second mothers, knowing him as well as family, and fighting for him to live a happy life. And much thanks goes to those who did! Over the years he was lovingly cared for by many, but most recently they included Hannah, Thompson, Dominique Hudalla, Kylee Coyour, Angela Serbus, Kaylynn VanRossum, Kaela Delperdang, Sean Wiese, Lisa Kerns, Fawn Kenyon, Jill Sohre, Mary Willette, Kirsten Loe, Katie Dorn, Jackie Adams and adopted sister Jaime Christopher. PCA’s from years gone by would stop in to visit when they were in town and rarely lost touch with him. Those include: Bill Patnaude, Laurel Dorn, Kirsten Malcolm, Linda O’Meara, Terri Burns, Courtney Roozing, Paula Fridlund, Candace Buesing Sjogren, Kristine Yost, Gae Larson, Chandra Hanson Doyle, Renae Cramer and Ann Enge. All became members of our family and contributed to his consistent happiness and quality care.
He began his schooling by attending Open Arms Developmental Achievement Center at MRCI at the age of 2 and charmed his way through the school system. His teachers included Linda C., Sue L, Kelly E. and Jodi F. And of course, by junior high he fell in love with the 4 lovely ladies, and they with him: Chris Larsen, Sandie Augedahl, Brenda Davey and Becky Stewart. After high school Nick attended LifeSkills where he made new friends and found new staff that would love and care for him.
His friends Jimmy C., Kristen V., Matt F. and Blake showed Nick that sharing was an important part of life. Sometimes it worked, and other times he found a way to weasel in on the computer or TV time the others had. On occasion, he and his friends needed to be separated, but inevitably found their way back to each other by scooting their chairs across the floor until they were both sitting next to each other arguing about who had control of the remote—a true love/hate relationship.
Nick’s physical life was hard from the beginning, but with each and every illness or diagnosis, he found a way to fight and adapt as best he could. He continued to smile and gave his best effort in adapting to his physical limitations so that he could continue to function, get what he wanted and remain spoiled and adored. His family worked hard to give him as many positive health experiences as possible, knowing that many would not be pleasant. This inevitably led to helping him not to be frightened. He tolerated numerous surgeries, picc lines, central lines, IV’s, medications, treatments, bowel and bladder procedures and much more. He was well known for calmly watching multiple IV attempts without complaint, walking and lying with pain on a daily basis, and being on the central line removal team at Gillette without spilling a single drop of his own blood (followed by a huge grin when we discovered what he had done). He was famous for ripping out his catheter and walking down the hall to leave within hours of spinal surgery. Many thanks to Dr. Andy Miller, Dr. Christopher Moertel, Tambra Dahlheimer NP, Dr. Koop, Dr. Tin and many others who helped to keep him alive.
Even though he was mostly non-verbal, everyone who knew him knew exactly what he wanted, how he wanted it and whether he was happy or sad. Communication truly is mostly non-verbal.
Nick’s family always felt he was placed on this earth to teach others about those with disabilities and he certainly taught everyone he touched, but we hope his legacy and the family’s willingness to share his story will benefit others in the medical field. By 2013, he had become the medical standard for physicians in the diagnosis of Coffin-Siris Syndrome and most recently was published in medical journals as the oldest living and only person with his syndrome and schwannomatosis tumors. Mostly he taught his family about the depth of love—love for each other, unconditional love for him, and love for the many people who became part of our family over the years. Those bonds will remain because of Nick. He enriched all of our lives and we hope to carry that on as people, as professionals and as the souls that he touched. He was an angel in life, and he is an angel now.
May the road rise up to meet you. May the wind be always at your back. May the sun shine warm upon your face. May the rains fall softly upon your fields, and until we meet again… May God hold you in the palm of His hand.

First and Last Name of Child(Required)

Full Name:




March 31, 1981

Passed Away:

October 24, 2015



Mankato, MN


Mankato, MN


Wendy S. Allen


Alexander "Sandy" Allen

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