Nora Allred – Service Dog

Nora Allred

Leonora (Nora) was born in March 2017 with a congenital birth defect called, Goldenhar Syndrome with Hemifacial Microsomia, which was not discovered until she was born. Goldenhar syndrome affects 1 in 5,600 live births. None of her genetic testing had shown detected any issues with her growth in utero. Although, we would not have done anything different if we had known in advance that something was wrong with her. Goldenhar syndrome can affect a person’s heart, airway, hearing, spine, kidneys, and facial structure. In Nora’s case we felt blessed that it didn’t affect her heart or kidneys, but it did affect her jaw which makes it difficult for her to breathe and eat. Goldenhar syndrome has also caused her to have bilateral hearing loss, and caused her to be born without part of her bone in her jaw. Recently, she it was discovered that she also has several bones that are fused in her cervical spine that affect her stature and spine which is now being monitored by her neurosurgeon.

From the beginning we knew that Nora was going to need extra care and love due to the many procedures and surgeries she will need to correct her jaw which was causing most of her issues. When Nora was born she spent 7 days in the NICU at the IMC hosptial in Murray, UT. , and was later transferred to the NICU at Primary Children’s Hospital in Salt Lake City, UT for an additional 30 days. The Hemifacial Microsomia diagnosis has caused her to have facial asymmetry due to the missing part of her jaw, and makes it difficult to eat, breathe, and talk. When she was just 3 weeks old she had surgery to have a tracheostomy tube placed to help her breathe due to her tongue obstructing her airway, and had a gastric tube placed to assist her to eat. Learning to eat and how to communicate have been a challenge, but Nora continues to learn ways to achieve both. Nora is a vibrant 4 year old that cognitively understands, but struggles with receptive language which is why she uses multiple forms to communicate. Nora is has conductive hearing loss in one ear, and moderately HOH in the other ear. She wears bilateral BAHA hearing devices to help with her hearing loss. Currently she attends the Utah School for the Deaf and Blind (USDB) in Salt Lake City, UT where she is learning American Sign Language (ASL). She has been learning ASL since she was 18 month and as a family we have been learning side by side with her. She also has a ACC device that is a tool used to communicate speech with people that are not able to use ASL. Nora continues to get hours of speech and language therapy at her school, and privately through IMC rehab services. At 6 months old she started many differnt therapies such as feeding therapy, OT, PT, and a deaf mentor to help us help her so she can succeed in life. She has spent many hours of feeding therapy to learn to eat orally to prevent a oral aversion, but still needs the assistance of her g-tube and feeding pump to get the proper amount of calories for her daily intake. With her her diagnosis, and multiple issues we were told from the beginning that she will needs multiple surgeries to correct her jaw in order to have a secure airway get the trach tube out and the g-tube out.

Having Nora’s diagnosis leads to needing a lot of support and comfort from others. Nora will be having lots of medical issues and many surgeries in her near future. Nora’s service dog, Wall-e, would mean having a little buddy always by her side to give her companionship when life gets tough on her. A service animal would provide an give extra set of eyes and ears at all times. Wall-e would be able to let her know when she has lost her HME that acts like a filter on her trach, and would be able to let us know when her g-tube has fallen out. Even reminding her to make sure she gets her g-tube feeding. Currently, Wall-e is able to recognize some of her ASL signs to “stay”, “sit”, and “wait”. Wall-e would be a great be her extra set of ears to point her in the direction she should be paying attention to if her environment is too loud or distracting. There are many uses that Wall-e will be able to provide her service. Most importantly will give her a companion during the times she has to recover from surgery. Nora will continue to have many doctor appointments, surgeries, and therapies throughout her life and as a family we will continue to support and grow with her. Having a service dog for her would help her in more ways than we can express.