Team Zay
Azaylea has quite a few diagnoses but the main one they all stem from is PCD or Primary Ciliary Dyskinesia. The cilia in her body don't work properly so she has no way to filter out mucus and bacteria. So basically whatever she breathes in stays in. It affects her sinuses, ears, respiratory system, digestive system, and even her reproductive system.
In many ways she’s a normal happy 6 year old. She love unicorns, her siblings, and running around being a kid. In other ways her life is nothing like most kids, she had so many surgeries it’s hard to count, she’s almost constantly on antibiotics, she needs a machine to help shake her lungs clear.
Covid has hit our family very hard. We can not risk Azaylea getting sick, so she’s been quarantined, we have strict hand washing policies, we don’t have visitors, and I’ve had to take over seven weeks off work. We are struggling to make ends meet and we don’t know when or if we will be able to let her go back to school.
We were recently dealt another blow, Azaylea’s insurance may not longer cover her specialists and doctors who know her and her disease because we have to travel out of state to find anyone who has treated PCD before. We pay out of pocket for the gas, hotels, and food for these trips.
On our most recent visit we found out that Zay's lung function is down to 74%... its been going down farther with every appointment. We have a plan in place. She had cultures done, depending on what that shows she will get an oral antibiotic for 3 weeks. She will also start on inhaled (nebulizer) pulmozyme if insurance will cover it. If not, then she will start on hypertonic saline.
She will be seen back in 1 month here in St Louis. If her lung function isn't dramatically improved, she will be admitted to the hospital for 2 weeks for IV antibiotics, aggressive physio therapy, bronchoscopy, and possible picc line. It's almost certain she will be getting admitted no matter what. Her numbers are going down quickly and her doctor thinks it’s time to get aggressive with her treatment before more permanent damage is done.
I need help funding this two week visit. My resources have already been drained handling the corona pandemic. I need help paying for gas, a hotel, food, and everything else involved with staying out of town for two week with a sick child.
I know everyone is struggling with the effects of the pandemic themselves but if you can help at all it would be so appreciated and really directly help Azaylea’s quality of life. 