Rare Community Mourns Loss of Daughter of Founders of The Alagille Syndrome Alliance

Alaina Kaitlyn Hahn entered the world at 1:12 am on September 30, 1990, in Seattle, Washington. Fittingly, she chose the early morning hours, at 3:21 am, on January 15, 2015, in Portland, Oregon, to make her exit and earn her angel wings. Alaina died as she lived, with strength and determination to her last breath. Stubborn and opinionated, loving and sweet, driven, always striving to achieve lofty goals, she lived and breathed her favorite motto – Live Laugh Love – every single day of her short life.

Alaina was born with a rare genetic disease called Alagille Syndrome (ALGS) that challenged her daily for 24 years. Tiny at birth, she grew slowly and painstakingly, dealing with incessant itching and other symptoms of her disease. When she was 11 years old, she had a life-changing surgery that relieved the itching and enabled her to grow and thrive. Twelve amazing years followed as she graduated from high school, community college, and the University of Oregon, obtaining her Bachelor’s degree in Human Physiology in 2013. Orthotics and prosthetics was Alaina’s passion, and she planned to pursue certification as an O&P Technician, then obtain her Master’s in O&P at the University of Washington. She hoped to one day operate her own O&P clinic for children with limb loss.

While a student and following her graduation from U of O, Alaina worked part-time and volunteered at summer camps, outdoor school, and children’s hospital camp. She loved the independence that employment provided and was always striving to find jobs that could accommodate her crazy schedule and health challenges. Never idle, Alaina was constantly on Facebook, Pinterest, Instagram, and numerous other social media sites, chatting with friends, providing advice to parents and children with ALGS, keeping in touch with her broad social circle, and expressing her unique personality and style.

As Alaina’s health declined throughout 2014, it became obvious that she would need a liver transplant. Shortly before Christmas she was put on the waiting list at Oregon Health & Science University. A long time coming, this was encouraging to Alaina and she celebrated with announcements on Facebook, Twitter, and other sites. Although Alaina had boundless drive and determination, she lived in a body that was not able to keep up. Her health declined much more quickly than anticipated and she never received the transplant she so desperately wanted and needed.

Alaina’s favorite color was purple. She loved frozen gummy bears because they melted in her mouth rather than sticking to her teeth. Pasta, pizza, balsamic chicken and chicken masala, sour candy pacifiers, sourdough bread, soft pretzels and salt bagels were some of her favorite foods. Always meticulous about her appearance, Alaina loved American Eagle jeans, her U of O jersey and T-shirts, Pura Vida bracelets, silver rings, and beanie hats. Her Unitarian Universalist chalice necklace never came off, except for showers. Frustrated by the persistent cowlicks in her bangs, Alaina prefered to straighten her hair, and loved manicures. She enjoyed strumming her ukelele, and dreamed of building a tiny house, travelling the world, marrying, adopting children with limb loss, and growing old and grey. A trip to India in October 2013 with her mom was the realization of a dream, the trip of a lifetime, and she hoped to return one day to further explore this amazing country. Alaina had limitless dreams, and enormous plans and aspirations, which she would have achieved had her body not been so frail.

Alaina is survived by her parents Cindy Luxhoj Hahn and Chris Hahn, her brothers Gavin and Ian Hahn, her grandparents Anton and Sonja Luxhoj and Walther and Caecilia Hahn, and numerous aunts, uncles, cousins and more distant relatives. A Life Celebration is being planned for Thursday, April 16, 2015, in Portland, Oregon, at a location to be determined. Details will be posted to Facebook and other social media when available. Everyone in Alaina’s vast network of family and friends is invited to share in celebrating the amazing young woman we were all privileged to know and love. In lieu of flowers, Alaina’s parents ask that donations be made in her memory to the Alagille Syndrome Alliance (www.alagille.org), Camp Unirondack (www.unirondack.org), Stanley Stamm Children’s Hospital Camp (www.seattlechildrens.org/clinics-programs/stanley-stamm-summer-camp/), or Northwest Outdoor Science School (www.nwresd.k12.or.us/instrserv/noss/).

On a clear night, look up to the sky and admire the new shining star, the one burning more brightly and steadily than the rest – it is Alaina watching over us, telling us not to dwell on what might have been but to focus on everything the world has to offer. Live it in her honor, Laugh loudly and often, Love like there is no tomorrow. This is Alaina’s legacy.

 

The Global Genes Team mourns alongside the rare disease community at large over the recent passing of Alaina Kaitlyn Hahn.