346
346
3

Save Kelly's Vision

$26,430 of $29,000 goal

Raised by 344 people in 5 months
Created January 9, 2019
Fundraising Team
on behalf of Kelly Conley
Recently four medical specialists stood at the foot of Kelly's hospital bed. “You have a rare manifestation of your rare disease”. She'd been admitted to the hospital four days prior after a trip to the Emergency Room after a week of an unrelenting and worsening headache and unexplained eye and eyelid swelling and inflammation.

After three days of testing the specialists found that she currently has inflammation in her eyes, ocular nerve and aorta. The specialists then went on to explain the they have no guidelines for treating her. No clinical studies, no research, no protocol. The proposed treatment involves high risk drugs which have been developed to treat other diseases. 

To put the rarity of Kelly's illness into perspective, here are some statistics based upon the few studies that are out there. Fewer than two hundred people have ever had this same diagnosis (Cogan’s Disorder), which is characterized by hearing loss and eye inflammation. Of these 200 people with Cogan’s, less than 50% experience complete hearing loss in both ears. Of these 200 people, less than 10% ever develop inflammation in their heart. Inflammation (vasculitis) of the aorta is one of the only potentially life-threatening conditions of Cogan’s (7 people are known to have died from congestive heart failure caused by vasculitis, aortitis, or both).

Kelly has already lost two of her senses (hearing and vestibular) and now has impaired vision. She wants to do all she can to save her vision, and ideally find a way to reverse any damage to her vision. Kelly would like to pursue an experimental treatment at a facility in Southern California. The two-week procedure will harvest stem cells from her own body and introduce them back into her blood stream. This treatment is extremely low risk as the stem cells are created from her own cells. The ideal outcome would be a reversal of the current symptoms and to stop the disease from progressing any further. 

Kelly will need $20,000 for the experimental procedure plus $5,000 for travel, accommodations, and loss of income. She is also hoping for an additional $4,000 to help with their dwindled savings account in order to improve her quality of life and allow access to additional medical specialists once she has the procedure.

A Little More About Kelly
Kelly is an uncommonly strong person. This will not stop her. When she lost her balance system in both ears (rare) in May of 2016, she endured months of physical therapy in order to learn to walk again (now she can almost always walk in a straight line). When she had to stop driving for five months she gathered the courage and skill to drive again safely (although currently not in the dark). When she lost all of her hearing in both ears suddenly (rare) over the course of four months, she found apps and adaptations to continue communicating and began learning ASL. When the steroid eye drops used to control the inflammation in my eyes caused cataracts, she overcame her eye-related phobias and had two cataract lens replacement surgeries and one laser eye surgery at the age of 39. When her third son died in utero two weeks before his due date because of a tight knot in his umbilical cord (rare) she faced grief head on and knit twenty beautiful baby sweaters to donate to families in need. This new manifestation will not stop her either. She will continue to love her kids, her partner, and her friends fiercely. She will continue to bake and make good food and create art and hand sewn and hand knit objects. She passionately asks for your financial support as she faces this new challenge with fierceness.
+ Read More
Thank you so much to everyone who contributed to the gofundme, allowing me to quickly get the treatment I needed. We returned from California on February second.
My treatment days were 9a to 5p Monday through Friday for two weeks. They consisted of treatments (lots of IVs) designed to strengthen my system, detox, reduce inflammation and put my body into the ideal state to receive the stem cells. I had the stem cell infusion on Jan 31, specifically I received exosomes. These cells “play a vital role in the communication and rejuvenation of all the cells in our body”
The total healing process is a year long although most people see improvement in the first 100 days. The cells will be multiplying and finding their way to the damaged tissues in my body.
To aid in the healing process my goals for the next 100 days are to:

reduce stress

eat an anti inflammatory diet

rest when I need to

maintain a hearty intake of specifically designed supplements and medications

create a calming and healing environment in my house

This process will involve saying No to stressors and extra commitments. This will be hard for me as I already feel isolated and have had to say no to a lot in the last 2.5 years. But I want to my body to do the work of healing!

After 100 days I will return for additional treatments and another infusion of stem cells. The second treatment time is only four days and I will likely be going back at the end of May or beginning of June.
+ Read More
GOOD NEWS!!!!!

Thanks to you, all the hundreds of generous donors, Kelly has raised enough to start the treatment in Beverly Hills!!!

They were also gifted 4 plane ✈️ tickets so her whole family is leaving for California this weekend. While there, Kelly will spend most of her time in the treatment facility, but we would love to help fund some fun things for her kids to do in LA.

If you have any fun ideas or have passes to museums or amusement parks in the LA area please comment below or message us.

Also, please note that we are still aiming to hit the campaign goal so that they can have a cushion for any unforeseen expenses related to the treatments.

Thank you so MUCH!!! Blessing to you all.
+ Read More
Many of you are probably already aware, and may have found this campaign through the TV news coverage. But for those of you that have not seen the local coverage from last night, here are the links:

https://kdvr.com/2019/01/10/local-woman-with-extremely-rare-disease-has-developed-extremely-rare-complications/

https://denver.cbslocal.com/2019/01/10/kelly-conley-cogans-disorder-rare-disease/
+ Read More
Read a Previous Update

$26,430 of $29,000 goal

Raised by 344 people in 5 months
Created January 9, 2019
Fundraising Team
on behalf of Kelly Conley
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
DS
$100
David Scott
2 months ago
ML
$50
Michael Liller
2 months ago
MO
$25
Melissa Orgel
2 months ago
MK
$75
Melissa Kisicki
2 months ago
KH
$50
Karin Hohman
2 months ago
BR
$70
Becky Ross
2 months ago
LB
$20
Laurel Berch
2 months ago
NM
$75
Nicole Miller
2 months ago
MS
$50
Michael Samson
2 months ago
CR
$40
Catherine Rogers
2 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.