Emma is a 14 year old girl, from Onset, Ma. Last summer Emma's life drastically changed. She has been suffering for almost a year from Stevens Johnson Syndrome/Tens. (Toxic Epi Derma Necrolysis)
This is a very rare condition and Emma has been dealing with the most severe form. Emmas Boston doctors have said they have never seen a case as severe as hers.
In Emma's case Stevens-Johnson syndrome was caused by an adverse reaction to a medication. The syndrome often begins with flu-like symptoms, followed by a rash that spreads and forms blisters. Blisters form inside and outside the body. The skin eventually dies and peels off.
It literally burned her from the inside out!
Emma had 100% Skin involvment!
Emma was in a medical induced coma for 16 days and in a Burn Bubble to keep the air around her warm and humidified to help her skin heal.
Emma is now at home , with a very long road to recovery.
She weighs under 100 lbs and is not able to gain weight. She has a g-tube, gets formula feeds, but the feeds upset her stomach. She can take food by mouth, but not without choking due to esophageal strictures. She has had 3 surgeries to stretch her esophagus and will have more over the coming months. Eating is painful due to the swallowing, and unexplained abdominal pains.
Emma's eyes are painful all day and night. She does not have any vision in her right eye. Light sensitivity and extreme eye dryness cause a lot of pain. Her left eye vision fluctuates from 20/60 or 20/100. Her hearing has decreased, also to scarring.
Emma's lungs have a lot of scar tissue, her right lung has chronic pneumonia.
She needs to have repeated weekly trips to Boston hospitals for additional treatments. Travel and hospital expenses add up quickly!
Emma is back from the hospital and lives at home with her two younger sisters, Abby 12 and Lorelei 3, her mother Jen and father Richard. Jen stays home to care for Emma. Richard, a fire fighter with the Onset, MA Fire Department is working as many hours as he can.
We would love to help Emma's Family with the cost of treatment and recovery.
Some of the things we would like to raise money to support are:
-Prose Lenses - These cost around $10,000.00 with a
$5,000.00 deposit. They will help the light sensitivity and dryness.
-Emma’s medications, not covered by insurance
-The eye drops cost about $400.00 a month
-Over the counter meds - around $250.00
-Travel – Hospital visits to Boston 2 to 3 times a week
Whatever you can do to help with the medical expenses would be greatly appreciated.
To find out more about Stevens Johnson Syndrome, and what Emma has been through, click on the links below. More than 100 medications can cause SJS.
Mayo Clinic Stevens Johnson Syndrome
Stevens Johnson Syndrome Foundation
- Rob Rhuda
- Nina Hayes
- Matthew Connelly
- Lauren Mccarthy
Organizer and beneficiary
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