Stevens Johnsons Syndrome
SJS is a very rare, acute, serious, and potentially fatal skin reaction in which there is sheet-like skin and mucosal loss. Using current definitions, it is nearly always caused by medications.
It not only effects the skin but the mucosal membranes of the body including the mouth, ears and eyes.
Effects of Stevens Johnson Syndrome vary depending on the severity (Chloe had the top end in regards to the eyes and lower scales for the other areas) of death, brain damage, blindness, severe scarring of the body, hearing and hair loss, mental and emotional issues, and bowel issues.
Hospitalisation is only the beginning and to get over the fatality of the syndrome, but the effects linger on for the rest of your life.
On Dec 4 2014, Chloe Sirolli went to bed like any other 4 yr old in WA. She was happy, laughing and cuddling her two sisters. She woke at 11pm with swollen eyes and what looked like a rash on her body. Little were we to know that this was going to be the beginning of a large scale fight back from our little warrior princess.
Chloe was admitted to PMH in the next 24 hours and would spend the best part of the next three weeks at PHM in isolation and under 24 hour nurse supervision.
Unfortunately, at the beginning of the process, the doctors were unsure of the cause or what they were dealing with because of the rarity of SJS.
Chloe’s body was so badly covered in lesions that she was treated by the burns unit at PHM as well as the dermatological team.
Her mouth, lips and throat were covered in large, bleeding, puss blisters which made it impossible for her to eat or drink and was nourished by a tube inserted in her nose.
Her eyes were swollen shut and were forcefully opened several times a day (sometimes up to 8) for eye drops and surgical scrapings to ensure they didn’t stick together permanently.
Chloe engaged with speech pathologists to remember how to swallow again, Occupational Therapists to get walking again and countless other agencies, but with 18 days of torture and agony behind us (we thought the worst of it) we left PMH and returned to the support of our families.
Since that time Chloe’s eyes progressively got worse. She no longer had any Cornea in each eye meaning that she could not see and was completely photophobic, requiring her to wear dark sunglasses, a wide brimmed hat (even inside on most days) . She was unable to keep any moisture in her eye therefore struggles with dryness which will be an other ongoing problem with the irritation meaning her eyes will never look the same either.
The inflammation in her eyes requires strong drugs to control it and there has been slight improvement in this after 4 months but unfortunately the damage has been done. Her eye lid structure has changed and they now face inward meaning her eyelashes rub against her eye making it even more painful for her to the point where she has not opened her eyes in over 3 months unless being forced open by her parents to administer the countless number of drops required (which to a painful, swollen area is a trauma in its self)
She has had currently 9 surgeries in 4 months to assist the eyes but unfortunately there has been no progress unless you count the diagnosis that she will be blind as progress.
Chloe also has had to deal with the fall out of Post-Traumatic Stress. She has been affected to the point where she does not want to be alone and requires a lot of support to remain in a happy, well balanced mindset that we would expect all little children to be exuding.
Her skin has mended well but there are still remnants of the scarring that the lesions caused over her body but we have been told that it will heal over time.
Chloe will need to learn Braille and will learn to move around with a Cane. Her school, social and future life will be part of this journey she has been through.
There are hopes by the amazing Dr’s that we work with that they can improve the condition in Chloe’s eyes (this will not allow her to see but stop the constant pain she is in and remove some of the sensitivity to light) so she can have a more NORMAL standard of life and get back into the outdoors which is where she loved to be. There may be flights involved to surgeons in America at the Boston Eye Clinic who have developed contact lenses to deal with the dry eye condition Chloe now has due to SJS.
Chloe now has a modified diet which includes Gluten Free and Lactose Free with Low sugar. This is in order to assist with the healing process of the body. She is on numerous natural remedies to assist with her mental, emotional and physical well-being while also being on numerous medications for her nerve endings in her eyes and for the extreme pain. She is also on a strong medication to reduce her immune system to allow her eyes to heal themselves.
We are taking a medical/spiritual and natural route to assist with her healing. Not discounting any of the benefits of these areas.
Through all of this Chloe has been an absolute Trouper. She has battled through with the intestinal fortitude we knew she had and has amazed all around her. She has had her setbacks but has returned to school after each surgery, determined to continue with her life and with her friends. She is our little Super hero. She is inspirational.
We are fundraising to cover medical costs for expensive procedures and to cover her extensive day to day medical bills. We would also like to assist Chloe in achieving the same stardard of life as her peers by purchasing assistive technology and allowing her every chance to LIVE LIFE to the FULL
Hi Everyone, we havent updated this in a while so I thought I would do so today.
We are now in August and Chloe's condition has improved. Although still blind, Chloe's standard of life has improved since her eyes have conjunctivalised. she is now able to play outsider comfrotably with her hat and sunglasses on and has less pain than before.
We are still continuing with her eye care and her medicines as there is still a lot of healing to do.
We have an appointment with a leading eye lid specialist early in September to perform a surgery which involves invertiung her eyelids so they will be back how they used to be and then to do a few other procedures to help the eyes become more stable in their health.
Chloe is now attending three full days of kindy and is enjoying her Karate and horse riding lessons.
Thank you everyone for all your support so far.