This is Tiaré, she’s 3 years old, and she’s fighting for her life in the ICU at the Sydney Children’s Hospital.
Tiaré & her family need your help!
Following a routine Tonsil & Adenoid removal on the 5th august 2016, a viral infection caused a rare neurological brain disease. It is called acute necrotizing encephalopathy (ANE). ANE is very aggressive and has caused extensive damage to large areas of Tiaré’s brain. We do not know how much is repairable…
The specific type of damage to Tiaré’s brain has only been reported in a couple of hundred cases. She has been sedated for over a week and steroids and IV immunoglobulin were administered to halt this damage. There are a variety of outcomes ranging from death to full recovery.
“She is very sick, but doing an awesome job of trying not to be. Our little sunshine.” – Tam (Tiaré’s Mother)
Of those who do survive, about half have permanent brain damage due to tissue necrosis, resulting in impairments in walking, speech, and other basic functions. Unfortunately at this point in time Tiaré cannot speak, or use her limbs with purpose. The neurologist said there is still the possibility she could succumb to her medical problems.
Since admittance, Tiaré has been unstable and nearly died on 13th August when she “blew a pupil”. An emergency CT scan found that more damage was still occurring due to internal pressures in her brain. Tiaré’s brain was swelling against the skull and had impacted on her optic nerve. Tiaré had to undergo surgery, where the medical team were able to successfully insert a pressure monitor into her brain. It wasn’t a therapy to improve her health as such, but gives the medical team a guide for drug treatment when her brain swells.
Tiaré’s sedation is slowly being reduced. This has to be managed tightly. Tiaré has been sedated for so long that she will get withdrawals (vomiting, diarrhoea, sweats, increased heart rate) if the sedation is removed too quickly. Her eyes are opening a little. She is teeth grinding a lot when awake so a mouth guard was inserted, as Tiaré is also damaging her mouth/tongue when grinding. Tiaré also managed small toes movements & hand movements. The physiotherapists are using foot braces due to risk of drop foot from hyperextension.
Good things: her heart is in good condition, her lungs are doing well, Tiaré is coughing secretions up for suction and her legs aren’t stiffening anymore. Her liver was previously quite damaged and kidneys a little damaged, but now kidneys are normal and liver very close to normal function. Gross anatomy of eye looks normal & optic nerve doesn’t appear to be swollen. This is a positive sign for vision. Temperature controlling “cooling pad” is no longer required. Tiaré no longer requires the two cardiovascular drugs, nor insulin, which was used to counteract side effects of drugs. A lot of people have been involved in an effort to get to this point.
“We think she is so brave and she is so very loved. The neurologists have told us if she survives, she is most likely to be severely disabled. We love Tiaré so very much and wish for the best outcome and that she will recover as much brain function as possible. We have a big rehabilitation journey ahead with Tiaré. With kindness from the crowd funding movement, we feel we can do the best to return Tiaré to the fun, energetic, intelligent joker she was. We want Tiaré to live her life to her full potential and get back to enjoying swimming lessons and her ballet scholarship. Thank you to everyone who has shown your love and support.” – Tam (Tiaré’s Mother)
As you can imagine, the costs for such a tragic occurrence begin to mount quickly, hospital parking, accommodation, care for Tiaré’s younger sister while her parents are with her, meals, time off work; and these are just immediate. As Tiaré’s outcome is still unclear, possible future costs for rehabilitation cannot yet be measured. The road ahead is going to be tough, whatever the outcome, and we want to help ease some of the financial stress and struggles from this beautiful family so they can focus on being there for gorgeous Tiaré.
If you can help, any amount is greatly appreciated and we Thank You in advance!
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