Saving a 7 yr old Super Hero

Jordyn is 7 years old & earlier this year Grandma noticed that Jordyn was breathing very shallow & took her to see her pediatrician. Her pediatrician said that she couldn’t hear anything in her lungs abnormal but decided to do a pulmonary test, which she failed. She then referred her to a pediatric pulmonary doctor for a follow up test which she failed as well. Again, no one heard anything abnormal in her lungs. They did a CT scan of her lungs and found that she had fluid around her lungs restricting them from opening to their full capacity. On June 28th they did a lung biopsy and found that she had lumps all over the outside of her lungs.  They have since diagnosed her with Non-Specific Interstitial Lung Disease. This disease is normally found in 60 year olds and only a couple hundred cases in the nation when it comes to kids.  This is a life shortening disease. Her body is attacking and trying to kill her lungs and every test genetically has come back negative. The doctors know that she has a rare disease and now they are fighting against time to find what it is and help stop it before it is too late.

Jordyn is a beautiful girl that loves super heroes! She already has had to overcome so many issues being born deaf, she doesn’t cry tears or sweat, her hair has not grown, and she's had a failure to thrive. Recently a GI tube had to be inserted in her stomach to help her with nutrition since she only weights 34 pounds. Jordyn does not complain about being different and anyone that meets her absolutely falls in love with her. She is the most outgoing little girl I have ever seen! Shows up evry where with a smile! Unfortunately, now since being diagnosed with this disease she has spent 27 days in the hospital, she has to get infusions of steroids monthly, and constantly going to doctors for more blood work, and follow ups. Jordyn’s life has changed rapidly. Before too long she will need to be on oxygen and have 24 hour care which means that working outside the home will not be an option. 

She has a great family that will stop at nothing to care for her but they need our help!! They are in the process of trying to get time with a top leading rare disease/pulmonary  doctor in Tennessee or Denver (they are waiting to hear which direction is going to be the best for her. ) Any money donated will be used for the ongoing expenses that they've already and continue to endure. (Traveling to doctors, medical expenses, lengthy hospital stays and tests, etc.) 


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Organizer and beneficiary

Kristen Stone 
Sarasota, FL
Lisa Gugliemini 
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