In April of 2016, I became sick with a weird persistent pneumonia, which turned out to be a more serious condition. I was diagnosed with Tracheobroncomegaly with cystic bronchiectasis, also called Mounier-Kuhn Syndrome. It's an extremely rare progressive cystic lung disease. My lung bronchi and trachea are dilated, and floppy making them collapse on expiration and it difficult to breathe and live a normal life. In less than a year, it turned into Cardiomyopathy, erthromelagia, POTS, and most recently, Emphysema. Despite a healthy lifestyle, I’m now 36 years old with a body that’s choosing to work against me.
All of my symptoms stem back to a smooth muscle connective tissue disease, that has also impacted all five of our children. We are hoping within the next year, whole exome sequencing can give us an exact disease name aside from the "mix of Ehlers-Danlos Marfan and Loey dietz, or your own family connective tissue disease" that we've had thus far. There are suspicions of mitochondrial disorder, but all of these tests take months and without clarity, I've yet to have treatment for the lungs.
Constant breathing difficulty, pleuritic chest pain, heat intolerance and dizziness has made it impossible to continue my business from the physical realm. As photography was our family business, we lost all of our income when I became sick. My husband is now the caregiver to both myself and our children as I am up and down with my own issues, and our children are being seen frequently as well.
We hit hard times months ago when I had to stop photographing newborns, but I wanted to transition our business online to teaching. I know it can be done and I have the passion for it. I just didn't realize how long it would take and how one needs to be able to market to get a business off the ground. Not exactly an easy feat when you're struggling in many areas.
Casi along with my family and close friends began this fundraiser because they know me well enough to predict I couldn't pull the trigger unless they did. She spilled the beans and told me, so I asked her if I could log in and add something important to me.
When we had to close the photography business for this disease, it put us in a financially scary position. I was denied life insurance due to the heart and lung conditions, and am left with trying to build a new business that could be passed down to my husband in the chance I was unable to write also.
Our family will heal and we will get our lives back. I have faith in that. But until then, I need to stop being stubborn to pull us back out and focus on getting the treatment we all need. We're getting there and the support we've received so far was able to save our home. Our goal is to transition the photography business and create an online business in which we can keep alive and support our family from home or from wherever we have to go for treatment, whether I am sick or not. We're hopeful and confident we can rebuild our lives in time.
One day soon after we rebuild our business and get on our feet, we will turn this entire experience into a non-profit to help families find the financial, emotional and educational support they need when coping with an unexpected illness. I keep getting ahead of myself and it's time to start thinking realistic. This road is nowhere near over. In the meantime, I can't thank everyone enough for reaching out and starting this for us. Thank you for the messages and the emotional support.
Much love to you all.
The Flores Family
From Casi: Please join Kim's Support Group on FB here: https://www.facebook.com/groups/KimsSupportGroup/