Flores Family Fund

For: Kim Flores
Organizer: Casi Densmore-Koon
Flores Family Fund (Kim Flores)
of $10,000 goal
36% Complete
Raised by 39 donors

The Story

Our Story

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.

Your Support

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/

Fundraiser Updates

Posted on January 16, 2017

Posted on January 16, 2017

Hi everyone, this is Kim. I'm humbled and having a hard time finding words to thank everyone for their messages, love and support. I can't even begin to describe how hard it was to see this page in the first place, to accept the reality this was happening. Then to see how many people cared enough to help lift a family up, many of which don't know us or barely do. There are no words to even begin to thank you for that type of gratitude. 

Those who posted anonymously, thank you from the bottom of my heart.  And to those friends who did leave your names, you know I'm too stubborn to not email you. I love you all. I may be knocked down right now, but I will get back up to thank you personally. 

I didn't want to post this, but there's a reason I am transparent about life. For one, it stinks when people feel alone, and I know I'm not alone. I know other people have fallen too so I try to hold back my embarrassment when I tell it like it is. But I also wanted to share this because it was an incredibly kind thing for someone to do.  

We lost our family van. It's ok for now, as we have a small car to get to appointments until we can get on our feet and trade it for a mini van to fit us.

When I contacted the dealer about getting our things, he had every right to demand the deficit owed. It's business, and I get it. I expected it. We all have families to support.

Instead, he kindly replied and offered his apologies for our health circumstances. He wished us luck and good health in the coming months and said he hopes for the best for us. He closed our account and considered it a "voluntary relinquish". No debt owed!

This man was a complete stranger to us. I couldn't believe it. He ended his message by reminding me that "God won't close a door without opening another". Those words are going to be etched in my brain. He was truly a kind man. It was humbling. I use that word a lot, but it's true.

It's easy to get sucked into the grief of our lives changing, and lose faith in the bigger picture. I have to pull myself out of it everyday. Little things like his words give me hope. The messages on this page and in my email give me hope. Even if this page never existed those emails and FB messages gave me strength.

On the days where I'm telling everyone that I want to give up, I remind myself that there are a ton of people here and in our lives who stood up to help a family they barely knew. That alone is enough to keep me going. Because I can't let them or the kids down.

Thanks again for putting your faith in us. We have a few appts this week, so hopefully we get some insight into what's keeping this little girl dehydrated. I'll update soon. xo

love, Kim

Posted on January 11, 2017

Posted on January 11, 2017

Today was a rough start to the morning. It takes a lot to make my girl Elena cry and she's so much like her daddy that she usually holds it all in until it's too much.  I walked into the room to her and daddy hugging, in tears.  

Elena is the only one of us to have severe Mast cell dysfunction and her eosinophils are insanely high. Prednisone makes it worse the moment she comes off so she won't take it. Even though we are all doing a low histamine diet, anything can trigger it. She always has the rash, it's constantly there. But some days are just worse then others. Today is one of them:(

She's 11 and loves to write and draw so she and Hanna came up with an idea for a blog. I'll surprise everyone with it when she is able to get it together. Writing is a good outlet so maybe she can connect with other kids with severe atopic dermatitis, mast cell and Ehlers Danlos (or whatever they determine this is). This beast is not like the baby eczema she grew up with. Pray for comfort for her.  I tell her each week that one day we'll have answers. And one day she'll change someone's life with her story.

Thank you everyone for your love, messages and support. Love you all.

Kim and family

Posted on January 10, 2017

Posted on January 10, 2017

Yesterday I met with a Dr at UMMC who specializes in diseases of the trachea, and a pulmonary team familiar with cystic bronchiectasis. I least know there's no question this is Mounier Kuhn and it's not acquired. I read stories about people who regained their lives after the tracheobroncoplasty. I shared them on my Facebook page, excited with hope that I too could one day get my life back . They were able to hike and live a life again. I prayed that it would be an option.

At this time, I was told I won't be a candidate for the tracheobroncoplasty. The surgery was successful on people with acquired tracheobroncomegaly. Mine, is due to atrophy and a mutation in my smooth muscle and cartilage. Just like what happened with my eyes at 20 years old, and with my uterus at 32. The tissue is atrophying, and from what they could see on the CTA, filled with notches and divots. Airways need to be stable and not this large to function. It's progressive.

The surgery was designed to place a mesh on the outside of the lung bronchi and the trachea, and allow cartilage to re-grow over it and create a permanent flexible airway. Because I have a cartilage and smooth muscle defect, it won't re-grow.

Apparently, (makes sense), it's manifesting in my kidney and heart muscles too.

The feeling of hearing his kind voice apologize that there were no answers... was humbling.  And eye opening. There are none right now aside from trying to prolong function.

For now, we're finally scheduling a bronchoscope to look deeper and biopsy, and determine the severity of collapse. Then talk about c-pap and other options to "prolong" lung function. And then we just wait for whole exome sequencing.

I liked these two Drs.. a lot. It's crazy how they all know each other all over the world. He laughed and said if it does come down to being a "family disease", then I should get to pick the name. Wouldn't that be funny. 

Thank you everyone for the messages and support. It means way more than you'll ever know

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