Jinara's Medical Fund

I was born on Friday the 21st November 2014 with no complications although Mum had a few complications immediately after my delivery.

Day 2 of my life I started having twitches that begun with my left arm then progressively went to the entire left hand side of my body, when Mum and Dad approached Doctors and Nursing staff about this they were informed this was normal. This was a concern for my parents however being reassured by doctors I was cleared to go home on the Sunday afternoon, some 36 hours after I came into the world.

I went home around 3pm and by 6.30pm to 7pm I had around -6 seizures, mum immediately got Dad and we all raced back to Dubbo Hospital.

On arrival to Dubbo hospital the seizers continued however I was stabilized after much medication and many intravenous drips, Dubbo Hospital could only do so much for me and as they exhausted every avenue to stabilize me and basically save my life I needed more intensive care and so I was flown to Westmead Hospital Sydney.

I arrived at Westmead around 5am and by 4pm my Mum and Dad arrived by vehicle, by 4pm I was having a MRI done, I was still sedated therefore I don't think I felt anything.

When Mum and Dad arrived I was having my MRI done so they waited, Mum and Dad were called into the Counselling room and were informed three quarters of my brain was damaged/died off and it would of occurred sometime in the past 10 days, the Doctor giving us this information informed us a Specialist Doctor would look at the results first thing in the morning after which he would call us and meet with us regarding his findings.

After much anticipation and no sleep the next day arrived and Mum and Dad was telephoned by Dr Webster to organise to see him at 10am.
On arrival into the Counselling room at 10am Mum and Dad were greeted by Dr Webster, various heads of Departments like Neo science, Physiologists, Counsellors and others.
Mum and Dad were first taken to a room to view the MRI which clearly showed all the areas of my brain and Cerebral Cortex which had died off, again we were informed this happened sometime in the past ten days but which of those ten days nobody can confirm to us, Mum and Dad were told they needed to consider a Death Plan for me in the event major seizures happen again or something else goes wrong which they did.
Mum and Dad asked many questions and perhaps the most important question was/centred around my life expectancy, they were told I have a grave outcome and not having three quarters of my brain not working obviously severely has detriment to my living. Mum and Dad were speechless, traumatised and the list goes on, they were also confused because in the 9 month pregnancy term they had all the Anti Natal appointments, completed all the Ultra Sounds and 'everything' throughout the term was normal.
They also informed my parents I would be blind, deaf and wouldn’t be able to walk and talk and I have severe brain damage and disabilities.

I stayed at Westmead for some 7 days before I was flown home to Dubbo Hospital, after the fourth day at Westmead I begun opening my eyes and the heavy sedation begun wearing off.

For the next few months I begun to settle into my new life all be it being fed through a tube and continued medication for seizures which I am still on however Mum and Dad are determined to push me to do things and consequently after a few months the nasal gastric tube, which was feeding me, was finally removed and I begun drinking my bottles.

I had a few follow up appointments at Westmead whereby they were and continually surprised at what I can and cannot do including my vision and hearing, although limited it is now confirmed I can see and hear, to what extent only time will tell.

A few months ago, being my first winter, I got bronchiolitis and again my life was in question and I almost died again, my local Dr (Dr Fitzgerald) saved my life but this also involved incubating me and flying me back to Sydney, I was received by Helicopter/plane again only this time it was Sydney Children's hospital, again my Mum and Dad were asked about my Death Plan and if I do not make it through the night what they wished to do to keep me alive or let me pass away naturally. Although it is unclear it does appear I do pick up infections rather easily and this could be because of my brain damage.

After being at Sydney Children's Hospital in the Intensive Care Unit for a week I was again flown back to Dubbo Hospital, I don't give up without a fight and within 48 hours of being at Sydney Children's Hospital I was on my way to becoming better. 

Prior to me being born Mum worked at Delroy Campus School and Dad manages hotels/resorts/accommodation places but unfortunately I do require full time care and that means Mum cannot go back to work which entails Dad working away from others and his home for long periods so we can make ends meat, this often involves Dad working and living in another state and of course another problem with this is because of Dads work I can not receive any Government money or support because of the income threshold.
Unfortunately my Dad has had to sacrifice going away to work to support us all which is extremely hard on all of our family and especially him for it is taking precious time away we could be having together and especially not knowing how much time we do have

I have 2 wonderful Brothers who are 12 and 13 and they are my hero's also, they help Mum look after me when Dad is away, help Mum around the house and so much more.

My life consists of Dr appointments, physio, speech (when and if needed) and enjoying time with family and friends.
As, and if, I get older I will need further treatment and equipment to succeed in life.

I will be needing a wheel chair when I turn two $10,000. Opthamoligist appointments $230 each, Government only helps with one free physio lesson a fortnight.  Mum and Dad would like two a week $50 a lesson. Mum and Dad  would like to take me to a program called 'walk on' in Sydney. It entails intense training with the legs, it's mainly for spinal injury victims but have taken brain damaged cases and had great success. A young boy learnt to walk in three weeks but it is quite expensive $4000. Special Botox injections every 6 months into the muscle joints that are stiffening to reduce pain and try and keep movement, only done in Sydney and the list goes on. 

My family are trying to give me the best quality of life possible and need some help in doing so. If you could help in any way it would be much appreciated for it will take a little of the stress off my parents and siblings.
I do not know when my next brush with life will be.

To date unfortunately nobody can still tell Mum and Dad what happened or how this all happened to me.