Anyone who knows our daughter Hailey, also known as Lindsay, will say how strong, willing, outgoing, and smart she is. Growing up she would watch football with her dad seeing the cheerleaders she would say, “I want to do what they do cheer, tumble, and get the crowd going.” So we decided to give it a try, she instantly fell in love with the sport! She was only two at the time but wanted to learn more and more. She practiced and worked hard for 4 years, and then decided to take the love for the sport to a new level. Cheerleading lead to gymnastics and some can say it was love at first flip. With hard work and determination, within a year she was ready to try out for a competition squad. After a nerve rattling wait to see the results Lindsay began to feel aches and pains in her bones thinking it was soreness from all her hard work. After seeing various doctors who told us it was just growing pains or soreness from gymnastics we then decided to go UCLA Mattel Children’s Hospital, where Hailey was diagnosed with a polyarticular juvenile idiopathic arthritis in August 2016. Upon her diagnosis she started to have more issues over the next couple months, experiencing severe headaches and fevers and had to be hospitalized once again. It was then that she was diagnosed with Lupus Erythematosus in December 2016. Systemic lupus erythematosus, or lupus, is an autoimmune disease in which a person's immune system attacks various organs or cells of the body, causing damage and dysfunction. Lupus is called a multisystem disease because it can affect many different tissues and organs in the body.
She was in and out of the hospital over the next two years. 2019 has been our hardest test to date as Hailey was in the hospital for 4 consecutive months. It was tough on her and our family as she experienced the worst Lupus flare up, which was compromising all her vital organs. In addition our daughter has allergies to most medicine used to stabilize her, which made her case even more crucial and difficult. That is where we first encountered her Specialist in Child Life Christine Banderas and her social worker Meghan who were a huge help. Not only trying to keep Hailey comfortable happy and in good spirits during a rough time, but also offering support to my family and keeping us informed every step of the way. Christine was by my daughter’s side when I couldn’t be during surgeries and tests; she truly showed she cared for not only her but our whole family. Hailey was going through a lot during those 4 long months, a nurse in the PICU Katherine Daily would help in so many ways knowing Hailey was a princess she would come in and give her facials, do her nails and go on walks around the PICU floor. Dialysis, chemotherapy, as well as plasmapheresis were rigorous treatments yet having Child Life available to provide support and a light at the end of such a dark tunnel helped our daughter and our family cope. One of many of Hailey’s good memories that came while she was in the hospital was the chance to meet some players from the Los Angeles Dodgers whom she colored and played board games with, even couple a couple autographs for her and siblings. Hailey and our family are truly grateful to the child life team for all the wonderful memories we made when going through what seems like such an impossible situation in our lives. From having music therapy to having surprise visits from service dogs, it all made a difference in our daughter’s life. A big thank to Dr. Jacobs, social worker Meghan and all the nurses on the PICU who are amazing and make you feel as though you are with family. Our daughter is still in remission yet the treatment never changes. We can’t wait to find a cure for Lupus! Let’s solve the cruel mystery.
