We were approached by a friend and colleague about setting up a Go Fund me page. We were hesitant to agree; however, our family does need the support of others in order to best provide for our family, so here is a little bit about our current situation.
Our newest addition to our family was diagnosed with Trisomy 21 (Downs Syndrome). She is the most amazing little peanut, Aria Elisabeth Browe, and we are beyond blessed to have her as our daughter. We know that we will face many challenges as we work to help her grow and learn.
Since her birth, we have learned that our daughter has an ASD, VSD, and a PDA vein. These three heart defects caused fluid buildup in Aria’s lungs. After a visit to the NICU unit to drain the fluids from her lungs, she entered the early stages of heart failure and needed surgery. At one month old, Aria had a PDA ligation, where they closed the vein connecting her heart to her lungs. Aria is a fighter. She was able to heal quickly; however, during her surgery her vocal chord was damaged. As of now, her left vocal chord is paralyzed. The doctors are unable to tell us if this is permanent damage or temporary paralysis. Aria now has a narrowed airway. Due to her narrowed airway, Aria makes a constant squeaky noise when she breathes (called strider) and she is unable to use her voice in order to cry or coo.
Aria is now considered high risk when she catches a typical cold. Aria’s last cold caused two visits to the ER, one visit to the doctor, and a ten-day hospitalization. In addition to her narrowed airway, she also faces other challenges due to her complications of surgery. She is now at a higher risk for Bronchial Malacia, and she has a chance of aspiration. We have a barium swallow study scheduled to check for aspiration. Aria is now seeing a pulmonary specialist. Her specialist recommends Aria receive RSV shots once a month in order to keep her healthy. These shots are very expensive (approximately $1,000 per vaccination and she will need them for 5-6 months a year) and these vaccinations were denied by our insurance company. The doctor is working with us in order to appeal the denial. He also recommends she get these next year, and he stated that insurance will not cover it once she is over a year-old. Her pulmonary specialist also recommended a voice specialist for speech therapy. Our early intervention program does not have a voice specialist so we will need to seek out additional therapy than what is offered by the state. We will be seeking out a voice specialist through U of M. Aria might need additional medical equipment in order to help her communicate. A future surgery is also a possibility.
In addition to speech therapy, Aria will be continuing with her occupation and physical therapy. The therapists have already recommended certain equipment and toys to help Aria develop. The cost for equipment is undetermined as it is dependent on her needs as she grows and develops.
Other medical needs include two braces we have already had to purchase in order to help with Aria’s hip dysplasia. At our last appointment, the orthopedic doctor said that her hips looked good, but he recommended that we get another brace to use for three more months because children with Downs often have hip trouble later in life. Aria also has an appointment set up with Neuro Surgery because the doctors located a cyst on her lower spine. We are unsure if she will need surgery at this point, but it is a possibility. Aria also has a sleep study scheduled because she is showing symptoms of Sleep Apnea.
We know that this is just the beginning of many obstacles we will have to overcome as a family. There are some financial costs we will be facing. Immediate finical costs include a leave of absence that my wife is taking from work. She is taking an extended maternity leave in order to schedule and attend appointments for Aria. Aria will need special equipment, vitamins, and supplemental feeding products in order to better help her grow. In addition, we will be paying copays and deductibles for Aria’s appointments with her doctors and specialists.
Our doctor informed us that as Aria reaches school age, we will be responsible for any psychological testing we want to do that the school does not provide in order to make sure she gets the necessary accommodations to ensure the best learning environment. We will continue to provide Aria with therapy once her early intervention program is complete.
Reflecting on the possibilities has us to consider some of the challenges and expenses that we will face. However, this is a new journey for us so we are unsure of other costs that may arise. We can only provide a brief overlay of the challenges we know we will face based on our appointments thus far.
We appreciate all of your support. We ask that you continuously keep our family in your prayers. We know that through God all things are possible. Thank you for being part of our lives and encouraging us. We know it takes a village and we are grateful God has provided us with an amazing one.
Kevin, Karly, Alec and Aria Browe.