It seemed to be a pretty typical start up to the Holiday season, we were all getting ready to enjoy parties and friends and our first Christmas as a family of four. Our sweet Florence seemed fine, until we realized that something was very wrong. When Florence Alida (affectionately known to us all as Alida) was around 9 months old, we noticed that she was having difficulty breathing and was wheezing. These symptoms greatly intensified and Alida got much sicker, at times, waking up gasping for air. The next several months, as she worsened, involved trips to the Pediatric Urgent Care, the Pediatrician, the Emergency Room, and a pediatric Ear Nose and Throat specialist as we searched for an answer and relief for our baby. After a procedure at the ENT’s office where an unknown growth was found in Lida’s bronchial passageway, we found ourselves at Johns Hopkins All Children’s Hospital a few days later. While Alida was under anesthesia there, the growth (a granuloma, we came to learn) was partially removed to open her airways and a sample was taken for testing. I will never forget what it was like to watch our little baby being wheeled into and out of the OR, and what it was like being told that an unknown “mass” was found inside of our child. While we anxiously awaited an official diagnosis, none was able to be given, and the possibilities ranged. We were quarantined in our home for a few weeks, and Alida began medication therapy, with suspected Tuberculosis. We celebrated her first birthday in our home, while under quarantine! Alida’s breathing improved as the granuloma piece blocking her airway had been partially removed, but her health did not significantly improve overall, and she continued to struggle with her breathing and seemed to be in a great deal of pain.
A few weeks later, lab test results came back that stated Mycobacterium Avium (M. Avium) was found in the sample from the granuloma that was in Alida’s bronchial passageways/lungs. We had no idea what this was, but hoped we had the answer! Alida then began medication for Mycobacterium Avium Complex (MAC) and began monthly appointments with an Infectious Disease Specialist at All Children’s Hospital; appointments that we will continue for at least another year. Under medication therapy for MAC, Alida’s health and breathing have improved- but as we researched MAC, and with the help of a friend, got in touch with the Nontuberculous Mycobacteria Foundation (NTMir), we realized that our fight for our daughter’s health is not over. There are still many questions that need to be answered in regards to Alida’s rare illness, if she will fully recover and her future health. Since MAC is extremely rare, especially in a baby, there are many more answers that are needed to ensure that Florence is on the path to health and a full recovery.
Since learning more about this disease, and with blessing of her current Specialist at All Children’s, we have decided that our daughter would greatly benefit from being treated at the National Jewish Hospital (NJH) in Denver, Colorado. That leads us to where we are today, grateful for an improvement in our daughter’s health but in need of answers in regards to this rare disease.
We Need Your Help
We need your help to get Alida to National Jewish Hospital! National Jewish Hospital in Denver, Colorado is known world-wide for its expertise in working with MAC patients, such as Alida. Once in Denver at NJH, a team has been assembled to work specifically with her. This team consists of a Pulmonologist, an Infectious Disease physician, and an Immunologist.
Now, here is where we need your help:
We need your financial help to cover many medical bills that, even with insurance, our family has been unable to pay. We are reaching out for help to cover the costs of Alida’s care here in Florida, and for help to cover the costs of her being assessed and treated at National Jewish Hospital. We are also raising these funds to help cover the cost of airfare, room and board, and car rental for our upcoming 2 week stay in Denver, where Alida will be at NJH daily working with her team of doctors. We have set up this Go Fund Me solely for the purpose of covering these medical costs, and any money donated will go strictly to that cause.
We are deeply grateful for those who have taken the time to help us on this journey, and we welcome friends and family to ask us any questions they may have in relation to our daughter’s illness. We sincerely appreciate your donations as we work to ensure that our little girl gets care and treatment she needs, to live a long and healthy life. Thank you!
If you are interested in learning more, a great resources is:
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