Hello all and thanks for taking a look at our GoFundMe.

My daughter Scarlett has a extremely rare multi system genetic condition called KID Syndrome with the variant A88v, which is considered lethal. There are only around 100 medically recorded cases of her condition and only 20 recorded cases of the variant she has. KID stands for K-Keratitis (eyes) I - Icthyosis (skin) D - Deafness. Scarlett is already deaf. When Scarlett was diagnosed with her condition doctors gave her no more than a year to live and she now approaching 2 and half years old.

Over the past two years we have had to travel 1.5hrs one way sometimes twice a week to go to specialist appointments and with gas prices on the rise recently they have began to take a little bit of a toll on the household. Any donations will not only be used for travel back and forth to specialist appointments, but will also help us pay for food while we are going to these appointments, any dressings that we use on Scarlett's skin that isn't covered by insurance, diapers and Destin, even help pay for our bills at home seeing that every time I have to take off work for appointments I do not get paid along with anything else that may come up as we continue forward with her journey.

Scarlett is continuing to defy all odds with her condition. Unfortunately as we go to appointments many doctors often times still scratch their heads because they don't know how to attack some of the things going on with her skin and such. Your money will help us do whatever we can to stay on top of things that happen with her health and well being.

UPDATE as of 9/21/26:

Since originally creating this fundraiser new circumstances have arose. We were admitted into the hospital for Scarlett having pneumonia. Her left lung had also collapsed due to a worsening case of Scoliosis. While admitted we were informed that with Scarlett's condition and variant, many have passed from respiratory failure because of rising carbon dioxide levels in their blood from the genetic misspelling that causes the A88v variant.

With that being said, Scarlett has now been placed on full time high flow oxygen in order to prolong her life. If sent home on hospice mom, who was Scarlett's paid caregiver, will no longer be able to get paid and we will be solely be relying on my (dad) income.