Medical Treatment for Hailey

Hailey is a beautiful, vibrant 8 year old little girl. She has faced
multiple medical issues starting as young as 18 months old. No matter what new illness she is faced with she remains positive, joyful and confident with who she is.
When Hailey was just 18 months old she was diagnosed with alopecia. She almost lost all of her hair on the left side of her head. Hailey's hair grew back and fell out again. As of now, her hair is falling out and has not responded to the injections. Unfortunately, alopecia is the least of our worries.

When Hailey started kindergarten everything was going great until 1 month into the school year. Hailey got sick and had lost 4 pounds in a week. The doctors could not figure out what was wrong with her and they had to admit her into the hospital for further testing. She spent five days in the hospital and we never did get a real answer as to what was wrong with her. The rest of her kindergarten year was spent going to doctor after doctor to
try and figure out why she was having such debilitating GI issues. She had an endoscopy, her tonsils and adenoids removed, blood work and countless stool samples which all came back negative. Almost exactly 1 year later, right at the start of Hailey's 1st grade school year she started passing out and having seizures. She had multiple trips to the ER and to a neurologist all of which said they could not find anything. On September 12, 2012 Hailey had a seizure, this time she was on a holter monitor. It turned out that during the seizure Hailey's heart was not beating, not only
was it not beating but her heart flat lined for over 20 seconds.

We were told that we immediately had to take Hailey to All Children's Hospital and that they were going to have to implant a pacemaker. After a year of searching we finally had answers. Hailey was diagnosed with Sinus Node Dysfunction.

Towards the end of the school year it started to become clear to us that all of Hailey's medical issues were not resolved. Her GI issues persisted but then she just started to not look well. She had dark circles under her eyes, she would get very pale and had no energy. Our search for answers started again.

In just under 3 years Hailey has been seen by Gastroenterologist's, Immunologists, Ear Nose and Throat Specialists, Cardiologists, Dermatologists and Neurologists. She has undergone countless tests and not one came back with any answers. That is until now. On February 14, 2014 Hailey was seen by a Rheumatologist (we waited over 4 months for this  appointment) and she was diagnosed with Scleroderma and coup de sabre. This autoimmune disorder is extremely rare. In fact, according to Cleveland Clinic there are only 7,000-8,000 Americans who have scleroderma and only 1.5% are children under the age of 10. At this point the Rheumatologist wants Hailey to go to the Cleveland Clinic so a team of specialist can get together and decide what kind of testing needs to be done in order to ensure her organs have not been affected and to find the best treatment plan for Hailey.

We have always known Hailey was a one in a million child. We have heard multiple specialist confirm this. Our insurance is not accepted at Cleveland Clinic because we have a Florida based plan. We are in need of help in order to finally find the answers that will allow Hailey to have a normal life. The doctors say to expect to be in Cleveland for up to 15 days. We really have no clue how much all of this is going to cost us but we are desperate. Please help us get our baby to Cleveland so we can
finally get all the answers we so desperately need so that our baby girl can have her life back.
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Megan Miller 
Gibsonton, FL
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