Our strong Sharon and her battle with Arteriovenous Malformation

In early August, my 13 -year old sister Sharon, was airlifted from our home to Waikato hospital. This was the scariest and most heart-wrenching moment of our lives.

Usual morning routine, Mum wakeing up the kids for school, Sharon came out of her room and told Mum she had a really bad headache, Mum said to her she would get some panadol and to lay down and rest and she could stay home for the day. Sharon collapsed on her bed we were unable to wake her, no matter how much we tried, she then suffered 2 seizures and a stroke at this time We had no idea what was happening to her, unconscious she was airlifted to Waikato Hospital, where they immediately began tests and scans on her brain. Sharon had suffered a major deep brain bleed, seizure and stroke. They removed a large section of her right bone flap to alleviate pressure and to stop as much of the bleeding as they could.The surgeon at Waikato hospital saved her life, we dont know his name but for this our Thanks and love to him always.

Sharon was kept in an induced coma to give as much chance as possible for the swelling in her brain to go down. Two days later Sharon was airlifted to Starship Hospital, where they had placed her in PICU (pediatric intensive care unit) for constant monitoring of her vital signs while the doctors and surgeons tried to figure out what to do.

We found out while in Waikato Hospital, Sharon had been born with an AVM (Arteriovenous Malformation) which is a tangle of abnormal blood vessels connecting the arteries and veins in the brain. Which in her case, had been genetic. We had no idea what this was and kept asking how and why?? my parents had raised my sister from nine weeks old, I remember that day as if it was yesterday. 13 years ago, coming home from school to see my new baby sister and brother. We knew nothing of her genetic predispositions as AVM is extremely rare and hard to pick up on in children. She complained of a headache like all us kids did from time to time and paracetamol fixed all. When the surgeon told my mum this, her whole world fell apart not only for her Baby, the youngest in our family but our brother. I watched our mum turn straight to my brother with fear, pain and grief in her eyes at the prospect of my brother having this exact gene also. My sister and brother are biological siblings adopted at the same time.

Our brother fainted while we were in intensive care with Sharon. Because of the gene, they took him straight away for an MRI to see if they could find anything, he stayed in Hospital overnight for observation and was able to be back with us the next day. They did not find anything that alarmed them, however, when we return home, under strict medical advice, he will be put through all the test and examinations to see if he carries this gene. He is no longer allowed to participate in any contact sport. My brother loved his rugby and dreamed of becoming an all black one day.

Sharon's surgeon took her for an MRI and a MRA used specifically for the anatomy of the blood vessels in the brain. what we didn't know at the time, was that the scan was to check if Sharon was brain dead. What the surgeon had found was nothing short of a miracle. Sharon was very much still with us, in fact, a path had somehow opened in her brain leading to the AVM. The Surgeons were now able to get clear pictures taken of this path and of the AVM.

They had a look to see if they could coil her AVM, but it was too large so that plan was aborted.

After almost 3 weeks in a coma, they slowly lightened her (waking slowly) we were all extremely nervous, with her breathing tube being removed as the doctors and ourselves were unsure of the exact damage that was done. When she woke up, she was still our Sharon. She remembered all of us, she was scared and confused but squeezed our dads hand and called out to mum, best sound in the world.

Sharon had lost feeling of her left-hand side. Over time with help from ongoing physiotherapy, speech-language therapy and occupational therapy, Sharon has regained some amount of strength in her left side and is able to eat most solid foods again, this in itself a very difficult process. She can now stand and walk with help for very short amounts of time, but currently still needs the aid of a wheelchair and support while walking and standing. She tires very easily after small amounts of mental and physical activity.

Before this all happened, Sharon was a bright girl, full of life and love. Her passions were music, cooking singing and dancing and fighting for the kids she saw being bullied. She also has been bullied intermittently through her schooling life so she would and will always stick up for the ones she saw this happening too (To any professionals in the neurological field, perhaps further studies into the possibility of this triggering AVMS in children where the haemorrhaging occurs within the emotional part of the brain)

While in her coma, our parents sat by her bedside night and day, they read to her, sang and talked to her, played her favourite music, Stan Walker played quietly in the background night and day. We knew she could hear this and us.

We were excited to hear her start to sing again recently, Mum said this child must of been born singing because she's been singing forever, when she started on solid food as a baby she would hum, precious moments.

She is still intelligent, caring, feisty and stubborn as all heck, and at times gives the doctors and nurses a hard time. But it is her pure intense strength and motivation that has gotten her this far, and for that, we are unimaginably grateful and proud of her. While in starship she cried when she saw the other children with illnesses and said its not fair they're just kids.

Her loving and humble nature and caring for others while in pain herself, is testament to us all.

Sharon will undergo a series of radiotherapy on the area of her brain affected, a procedure known as 'Gamma knife surgery', (we are very fortunate to have this provided here in New Zealand) in hopes that it can shrink the ruptured AVM cluster to a manageable size to be small enough to remove without causing further damage. Sharon still has the live AVM, and while she has a chance of bleeding again before the radiation and surgeries, we remain hopeful and positive for her. Sharon will live with the effects that the AVM haemorrhage has had on her brain for the rest of her life. This procedure may take place in a private hospital, we are awaiting the outcome of this as it is not paid for by the DHB privately. But funded in Dunedin hospital.

following the outcome of radiotherapy a plan will be made to see if they can then operate and remove the AVM.

She will have another operation some time after to replace her bone flap with an acrylic replacement that is being made overseas.

Sharon and my family currently stay at a rehabilitation centre for children, where Sharon continues to work as hard as she can to regain short-term memory and physical strength in her left side.

She is emotional most days and wants to be home and with her friends, she is fully aware of what is happening to her and is being braver than anybody I know. She attended the best school there is and our prayers are that she will return to this school and to a teacher that always goes the extra mile for his students.

This has all been excruciating and hard for our family: emotionally, physically, mentally and financially. Ongoing costs and the stress of finding a permanent home that is suitable for her disability. Sharon's journey so far has been hard but she still has so much more to go through, with an uncertain and long road ahead of her.

Our family is extremely close, and Sharon finds immense comfort with our parents and siblings around her, which is greatly helping her recovery. With your love and support, we will be able to give Sharon everything she needs. This will also help with accommodation and travel expenses, meaning we can continue to spend time with Sharon, loving her, supporting her and ensuring she gets the medical treatment she desperately needs. I do not have all the medical terminology for this, but have given it in the way we understand.

All the health professionals involved in my sisters care have been amazing and we thank them all from the bottom of our hearts, may God bless you all and give you all the strength and foresight to help save our sister.

Currently, we would love to give Sharon the chance to live life to the fullest, as the future is uncertain.