BENEFITING: LOOK AT US ALLIANCE INCORPORATED
Olivia is a beautiful teenage girl who was born with Treacher Collins Syndrome. One of the characteristics of TCS is Microtia/Atresia, meaning no ear canal and the absence of an outer ear. In her short life she has endured several intense reconstructive surgeries to allow her to eat and breathe properly. Her dream is to have two "big" ears. Just as important to her, she wants to make sure that another less fortunate child, receives the medical care that they desperately need. Please give generously to make her dream a reality. Help her, while helping others. Your gift will be transformative.
Mother's Story: Choosing a name … Michelle? Tiffany? Olivia?...Yes, Olivia Michelle! Getting our new baby girl’s room ready … painting, decorating, laying out clothes … wondering who she will be more like … and all the other wonderful things that bring such expectant happiness with welcoming a new baby. This was going to be our last pregnancy and so we wanted to enjoy it for all we could. But little did we realize that things would take a dramatic turn.
A little over half way into the pregnancy, what is a routine check for most came back with some “concerns” from the Doctor and the call for some follow up examination using more in-depth ultrasound. During the ultrasound, it was discovered our baby girl’s forehead was slightly out of proportion to the rest of her little developing body. Not a big deal – right?
The rest of the pregnancy went as expected and we were all ready to welcome Olivia into our hearts and home – we even had her name all picked out and put up in large white letters on her freshly prepared bedroom wall. Then came the day of delivery. Contractions were normal. The delivery went as expected. But wait … something wasn’t right.
As soon as the umbilical cord was cut, the Doctor didn’t place Olivia on her mother’s chest. Instead, she was moved to an examination table on the far side of the room where a team of medical staff stood pouring over her. Eventually she was brought to mom and allowed to get acquainted for a few brief moments. In our joy we didn’t really even notice anything was out of place. It wasn’t until the Doctor began to gently explain that Olivia had some anomalies and pointed out her malformed ears and excessively recessed chin. It was like a clap of thunder that shook us out of our dreamy state. What happened? What’s wrong with her? How can this be? No!
The Doctor informed us that Olivia couldn’t stay and needed to be taken to the Intensive Care Unit right away. It would be a couple more hours before we would see her again… in ICU. At first the Doctors weren’t sure what Olivia’s condition was - or even if she would be able to hear or see. It was obvious she had airway issues that also made it difficult for her to feed due to her undersized jaw.
Over the next 24 hours we learned she had a condition known as Treacher Collins that had caused her to have multiple cranio-facial anomalies which we were now well aware of. Olivia didn’t end up needing to have a breathing tube the staff initially thought she might, but due to her excessively recessed jaw, she did need to be fed through a g-tube inserted directly into her stomach. It was the first of many surgeries, tests, procedures, and special caring-giving we were just entering into.
Knowing we were going to need special care, we sought out the advice of other families dealing with Treacher Collins through an online support group. We were fortunate enough to find a surgical team specializing in her condition, but it meant having to travel far from home for each examination and surgery.
While our medical insurance has covered most of the medical portion of the expenses, it has not covered any of the travel, or required extended time away from home, that has resulted in such substantial additional uncovered costs. Vacations are no longer time spent relaxing and having fun, but instead are used to travel for procedures and surgeries and squeeze in some fun if we can. We are trying to make the most of each of our trips by including some more typical family fun visiting the aquarium, the beach, or the Red Woods if Olivia is up to it. It has become so much just a part of how we live our lives that we often don’t even realize it - until times like the day we visited Mount Rushmore for a short weekend getaway to visit family in the area. As we were pulling into the parking garage, we noticed Olivia becoming extremely anxious. When we inquired with her as to what was wrong, she asked “What surgery am I having today?” She had come to the point where she associated parking garages with visits to the Doctor and surgery. We realized just how mingled things had become when one day Olivia excitedly asked, “Can we go to California again for a vacation? I’ll have a surgery.” Our hearts broke, but at the same time we burst with pride in the strength and love of our precious little girl.
Olivia has had to have not only multiple surgeries that have put her in constant catch up mode with her schooling, but also numerous procedures and sleep studies to monitor her sleep apnea – which slowly grows worse until she finally has to have another jaw distraction (extension) to open her airway. She has had two jaw distractions now, with her most recent performed in early 2014. She will need a third when she is fully grown if she can make it that long.
There has been, and will continue to be, a lot of tearful moments, but we are usually too busy caring for Olivia and our other three girls to spend much time feeling the sorrow. And besides, it has not all been pain and sorrow. Olivia has proven herself to be a very strong, delightful, intelligent, humorous, caring, friendly little girl. Despite all she has been through, she is VERY upbeat and happy. She gets along with everyone and makes friends easily if only given the opportunity.
During the hospital stay recovering from her cheek and eyelid surgery, Olivia shared a room with another little girl who was deep in depression from having her foot severed in a lawnmower accident. Although the girl’s foot had been reattached, she would not get out of bed to walk on it as she so desperately needed to in order to recover. The doctors and the girl’s family were beside themselves with fear that she would not walk and end up losing her foot despite the heroic efforts made to reattach it. Although Olivia was swollen and in pain from her own surgery, she still found the strength and compassion in her heart to look past her own plight, put on a smile and encourage her new friend to literally take that first step, asking her, “Do you want to go to the play room with me?” To everyone’s amazement, the little girl accepted the invitation and made the trip. The little girl’s family was overjoyed and the depression was pushed back. Before being discharged, the girl was walking again and making the much needed progress toward her own recovery.
More recently Olivia has shown an enthusiastic interest and strong aptitude in dance – taking every opportunity to ham it up and show her moves at weddings, teen gatherings, or just about anywhere there is music that moves her. She loves to laugh and make others laugh, as people often remark about how she always has a smile on her face.
She isn’t all fun and games, though, while no longer swimming competitively due to the physical demands, Olivia is now actively advancing her skills learning skateboard tricks. Olivia does well shrugging off rude comments or stares, or simply answering people’s questions about her condition, she still feels the pain of not being “normal.” She desperately wants to have her ears made “whole” so that she can “wear earrings and sunglasses” and wear her hair up without feeling embarrassed. Unfortunately, insurance will not cover the procedure to provide her the ears that would mean so much to her and that we would love to give her. With all the other expenses related to her care, it is unlikely we can pay for them within our own means.
Olivia is a blessing and we are so proud and happy to call her our daughter. We want to do all we can for her to give her as close to a normal life as we can, knowing we can’t take away all the pain or suffering she has already experienced or has yet to experience. Knowing she is such a blessing to others only makes us want to support her all the more. We love her so very much…