For those of you who are not familiar with Cystic Fibrosis, it is a life threatening disorder that damages the lungs and the digestive system. The average life expectancy is in the higher 30's right now. Of course, the degree of CF involvment differs from person to person. In people with CF, a defective gene causes a thick buildup of mucus in the lungs and pancreas. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually lung failure, leading to a transplant or death. In the pancreas, the mucus prevents the release of digestive enzymes that break down food and absorb vital nutrients. This disease is with Aria for life; there is no cure.
Every illness that Aria endures, every germ that invades her body, leaves scar tissue which reduces lung function. Its critical that she stays as healthy as possible. Which puts any type of daycare out of question.
Aria Mae is now four months old, and has finally hit 11 pounds! She has dropped down into the first percentile with her BMI. Studies show that having a BMI in the 50th precentile and higher at all times is related to the best lung function. Shes still considered a failure to thrive, and even being on her prescription 30 calorie formula, the weight gain is still a struggle. Her days start at 5:30 in the morning being force fed vitamins, antibiotics, and enzymes, followed by her nebulizer treatment and Chest Physical Therapy. As long as she is healthy, with no signs of a cold, her neb and CPT are performed twice a day that takes about an hour each session. As she gets older, the time will only increase. If there are signs of any sickness, its performed four times a day. As well as her other medications given multiple times a day.
Up until recently, other than her fluctuating weight gain, Aria has been healthy and hasnt had to use her sick plan! Mid March, we got the phone call that Arias spetum culture came back positive for Methicillin-Resistant Staphylococcus Aureus (MRSA) in her lungs. MRSA is a reocurring bacteria that can be carried on the skin as well. It can become resistant to most antibotics making it difficult to maintain. The problem is with MRSA in the lungs is that some studies show that if the bacteria is shown in the lungs of a CF patient for an extended period of time it can drastically decrease the life expectancy.
Despite the daily medications, treatments, doctors appointments, hospital visits, blood work, and the pain and discomfort that comes with cystic fibrosis, Aria Mae is such a content happy little girl. We were lucky enough, based on her age, CF mutuations, and overall health, to be given the chance to try and get rid of the MRSA bacteria out of her body completely! Which means, she would never have to worry about the bacteria again! Of course, like with any medications, there are some possible serious side effects. These new sets of medications could potentially cause her already low anemia levels to drop dangerously, as well as cause liver failure. Shes being montiored closely with weekly blood work at her pulomnary office. We are trying to be as optomistic as possible only hoping for the best that she comes out of this process MRSA free and with no other complications!
We were over joyed knowing that she was a candidate to go through this process, thinking this was possibly her break. Until it was time to pick up her three prescriptions to start this process. One of them is not covered by her insurance. Despite the many hours spent on the phone pleading, begging, and trying to get them to understand the benefits that she would be getting from this medication, the answer went unchanged. She needs to be on this medication, for six-nine months, depending on how her body takes it. Just one monthly prescription is almost $1,700. Without this medication, she could have a reoccuring infection of MRSA in her lungs, that causes her life to end so much quicker then what it could if MRSA wasnt in her body. Being diagnosed with MRSA in her lungs at only a few months olds, can cause serious complications for Arias health, especially on her lungs.
We've decided to try and reach out to all of our friends and family to raise money for Arias medications, so that she can continue the process of getting rid of the MRSA out of her body completely. Half of the money that is raised, we will be donating to the Cystic Fibrosis Foundation to help find a cure in Aria's name. Any amount of donation, will help Aria progress, and help her quality of life. Thank you all so much in advance, it is so greatly appreciated!
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