The Genesis School in New Port Richey held a fundraising SJS walk for 3 year old Riley Jeanne Brown on Friday. The amazing child who has battled through Stevens Johnson syndrome was on hand walking hand in hand with her friends. Due to her newly sensitive skin and eyes Riley sported protective clothing and sunglasses.
The fund raiser was held to help the family with the expensive lifesaving treatments that were required at All Children’s Hospital. Stevens Johnson syndrome is a rare and sometimes fatal autoimmune disease the causes the skin to burn, blister and peel from the body and internal organs. This is usually triggered by a drug reaction or allergy and there is no way to effectively predict when or how a person will be affected.
It is suspected that 3 year old Riley developed SJS after taking children’s Motrin. After experiencing a broken clavicle while playing Riley was prescribed Motrin to ease her pain. When she developed flu-like symptoms (aching, fever, rash) the doctor prescribed more Motrin and added Tylenol to the regimen. Mrs. Brown said she called the doctor when Riley got worse quickly, but was told that a quick worsening of symptoms was normal with the flu. The next morning Riley has blisters all over her body so bad that her eyes were swollen shut. At the All Children’s Hospital Riley received multiple surgeries, a blood transfusion and intravenous treatments over 16 days in the intensive care unit and 10 days on the regular floor of the hospital. It took a team of 14 doctors including a plastic surgeon and ophthalmologist to save Riley Brown.
At this time Riley’s skin scarring is healing well, but the scar tissue in and around her eyes poses a threat to her vision.
As an example of just how sensitive Riley’s eyes are to light these days her mother says that all the windows are covered with heavy drapes and even the television screen has a sheet over it.
When it came to saving their precious daughter Paul and Kristen Brown didn’t spare a thought for the expenses that would be involved. Despite having insurance the family is receiving medical bills that are staggering.
The community and Genesis School have been supportive with donations and the SJS walk for Riley. Riley’s teacher Carla Barr organized the event and said “The stress of a child being sick is enough, and then to add on the medical bills we knew we had to do something. A walk seemed like a good way to bring everyone together. When we organized the event, we didn’t know if Riley would be able to come, but she’s here. That makes it a celebration.”
To donate to help Riley Jeanne Brown, contact the Genesis School East Campus at (727) 372-9333.