Please help bring our daughter Ariana home

Help bring our daughter Ariana HOME

6th April 2013 our 16yr daughter was admitted into Geraldton Hospital with what they thought was Meningococcal Encephalitis. It was so hard to watch my girl who was working fulltime at McDonalds, and so excited to do her Certificate in Retail/Hospitality to having big dreams and setting goals for her future to, lying in a hospital bed, talking in a state of confusion thinking she was at work, to moving her hands like she was bagging a order then passing it onto me and saying… Mum, can you take their order out to them? I said to her, Bub you are at the hospital. She then looked at me and yelled, I know I’m at the f ’n hospital just take there order out, Gee I don’t know how you got a job here your f ‘n useless! We were then transferred to the ward and by this time Ariana had become Catatonic. The nurse said to me… I’m not sure what’s happening with your daughter but if you don’t get any answers you might want to look down the mental health path. I could not believe what I just heard! What the hell was going on! Was this really happening! A million questions and no answers. Two days later we were transferred down to Royal Perth Hospital. On the 9th April our girl lost her speech, mobility, and all bodily functions. Doctors admitted Ariana into ICU, Tracheostomy performed and put on life support in a coma. Two weeks later, which felt like eternity, we finally got a diagnosis, Anti NMDA RECEPTOR ENCEPHALITIS. In Ariana’s case this illness is an inflammation on the brain caused by a benign Teratoma Tumor, which triggered the immune system to attack the receptors of the brain. The doctors have told us that Ariana has no brain damage but has the symptoms of someone that does. Ariana is also the most Severe case in Australia. This illness was so rare at the time only 3000 people worldwide were known to have NMDA. An MRI & Ultrasound was done and there they found the benign Teratoma on her left ovary. The ovary was removed in the hope that Ariana would get better as this being the cause of this illness.

For the next 15 months our daughter lived and received treatment in Royal Perth Hospital. While in hospital Ariana had caught an infection in her PICC line, which caused an 30cm DVT from her inner elbow, up her neck and down into her lungs. Her body swelled and was looking lifeless. Ariana also had respiratory acidosis with aspiration pneumonia, and had to go back to ICU for Ventilatory support. Ariana has had many respiratory tract infections and numerous Med Calls.

Life for our family was put on hold as every day is consumed with lengthy visits, doctors meetings concerning treatments, and trying to juggle the kid’s schooling/sporting events, life!

The Operations/Procedures Ariana has had are…

Multiple Lumbar Puncture to monitor her CSF NMDA Receptor Antibodies.

Tracheostomy

Both Ovaries removed

Two x PEG insertion to her tummy for her fluid food

Three x Central lines

Three x Hickman Line

Suprapubic Catheter

Treatments

Multiple apheresis sessions

Intrathecal Rituximab (treatment injected into spinal fluid ) Ariana is the 1st in NMDA world to have this done.

Prednisolone

Cyclophosphamide

The above were all first & second line treatments and the only treatments that have been used for this condition.

On the 1st of July 2014, doctors then received a drug from America called Alemtuzumab. Used for MS, this drug basically strips the immune system to get rid of the NMDA Receptor Antibodies, hopefully unblocking the receptor that is keeping our daughter in this vegetative state. Ariana being the 3rd in the NMDA world to have this trailed.

9th July 2014 Ariana then 17yrs old was put into a Nursing Home Environment, where we were told she would get Rehabilitation and Stimulation to help with her recovery.

In the last two years many sacrifices have been made in our family life. We moved from Geraldton to Perth, a country town 5 ½ hours north of Perth City, leaving family, friends, schools and jobs, all asking, “What’s happening, can we help?”

Isiah, Ariana’s older brother had to give up his dream to be in the New Zealand Air Force, as he was in the process of being interviewed in NZ at the time she became ill. Josh and Shelby, younger brother and sister, have had to change schools, leaving all there friends behind. As competitive swimmers and talented all rounders in any sport, have had to give it all up, as all my time is consumed with Ariana’s well being. Ariana’s father moved from Sydney to Perth leaving his job, house, and 8 year old son Aiden behind.

Walter, my partner and Ariana’s stepdad has been in Ariana’s life since she was 18 months old, is working the FIFO job doing 4 weeks on, 1 week off so we can financially stand on our feet for now, Walter’s sacrifice so that I don’t have to work, therefore devoting my time to Ariana’s well being. My family are angry, hurt, suffering emotionally as Ariana fights this illness. As for myself, I am emotionally, mentally and physically struggling daily with having to run the household, be mum and dad, to be the taxi driver and the bank, juggle and balance day to day life. I try everyday, putting on a brave face for our children so they think that I am ok, but within I am screaming help. I miss Walter everyday, wanting him home with us, the kids need to have their dad home. Walter struggles daily not being home and not being able to hug us when we all need it most. I have legally become Ariana’s Advocate/Guardian so that I can protect her dignity, and be her voice because she cannot speak or communicate. I lhave been constantly battling the doctors, nurses, management, government agencies trying to get the basic daily care needs my daughter deserves. Trying to get her back into a hospital rehabilitation environment so she gets it everyday instead of twice a week. Driving 40 mins per day to visit our 18yr old daughter in a nursing home is emotionally, mentally, physically, financially, draining our family. Ariana only gets showered 3 times per week. Her face and teeth don’t get washed. Her legs and armpits only get shaved when I ask, her room gets cleaned once a week which smells of urine constantly. My girl smells because of her secretions and lack of oral hygiene. Daily basic care needs not being done.

Ariana’s daily routine is….

MON, WEDS, SAT on these days Ariana stays in bed until 2pm, put into wheelchair, transferred to a shower trolley, showered at 4pm then put back into bed. TUES, THURS, FRI, SUN Ariana gets put into her wheelchair between 11am – 12pm and back to bed between 1pm – 3pm it depends what time staff/carers get her up. Somewhere between all of this, Ariana has Physio twice a week at the most. The rest of the time Ariana is in her wheelchair, in front of the tv with other residents. For me I think daily stimulation and physio is the key to recovery. I see everyday her struggle, struggle against this illness, but Ariana’s a fighter, she’s fighting hard against this illness everyday, to have a better quality of life, and we as a family are fighting for her everyday because she has a whole life ahead of her.

We just want Ariana, our Queen, home! Where she belongs with her family, surrounded by her brothers, sister, grandparents, cousins, aunties and uncles and friends. Home where she can hear the laughter of many, home where she can listen to her own music instead of music from the 50’s. Where she can watch her own TV channels instead of watching what the older residents like to watch, home where she is loved by many, home where there is life and stimulation.

This is only a small part of the last two years, but I think this illness took hold of Ariana at the age of about 12, but I needed you, the public, family, and friends to be able to understand some of the now, what and how this illness has effected Ariana and our family.

We have been given funding for Ariana to have carers come into the home and help the family with the daily care needs and also to take her out into the community for daily outings or activities. The problem is….WE DON’T OWN OUR OWN HOME. We don’t like to ask for help but the time has come where we need to reach out.

We have recently been told if we don’t start using this funding we are going to lose it. This means if we lose it we wont be able to get it back and Ariana will have to stay in a nursing home permanently. We are wanting to give our daughter the best quality of life she deserves not waiting out her days to die surrounded by people she doesn’t know.