Myah was born on Saturday 15th January 2018 at 2:25am. Around 12 hours later we were the super proud parents to be taking her home.
But our happiness didn’t last long, during our first night at home we noticed Myah’s limbs twitching which eventually moved to her eye and the rest of her right side as well.
We raised our concerns at her 1 day old checks but we’re not prepared for the whirlwind to follow. The doctors grew increasingly concerned and we were transported by blue light ambulance to the John Radcliffe where after numerous tests and scans she was found to have a large bleed on the front left side of her brain.

When the neurosurgeons came to assess her, we were told to have as many family members visit as possible as she had very little chance of survival. They kept her sedated and medicated for the seizures caused by the bleed in the hope the bleed would stop and disperse by itself.
To everyone’s amazement, that is exactly what happened and just under 3 weeks later we were able to take her home with appointments for regular scans and checkups.
MRI and CT scans in the following months led them to believe she was born with a vascular malformation (blood vessels in the brain were not formed properly and therefore caused weakness in areas that caused the bleed).

As months went by she developed normally, being discharged from development reviews and physiotherapy, but at 7 and a half months old she had another bleed.
This time, she became more and more sleepy and eventually lifeless, being sent from the doctors, to the Horton Hospital in Banbury where she was given an MRI scan and another large bleed was found in the same area as the previous one.
An ambulance once again took us by blue light to the John Radcliffe hospital where they decided surgery would be the best option this time. The neurosurgeon explained the operation would take around 6 hours and the chances of her surviving were 50/50.
The night spent sat in the waiting room felt like an eternity.. but just after 6am the bed with our tiny human came through the doors and we were able to say goodnight. The operation went well and now it all rested on how she would recover.

Her recovery was amazing and within 24 hours of having her sedation lifted she was sat up playing and talking to us.
After her operation a biopsy on her tissue taken from the brain showed abnormal cells which they had narrowed down to around 10 different types of cancerous tumours.
Her sample was sent around 4 different hospitals and to almost 100 different specialists to find the exact one. 6 weeks later we had the results that her tumour was in fact an extremely rare form called AFH (angiomatoid fibrous hystiocytoma) of which only 7 other cases had ever been recorded in the world. She was the only one to have been born with it, and the 2nd to have it in the brain.
She is now almost 4 years old and still having regular MRI scans but so far the results have been positive. She is our little miracle.
We couldn’t thank the staff at the John Radcliffe enough for everything they did for us and our little girl. No amount of money could ever show how thankful we are, but it can help them to help more children like Myah and more families going through what we did.

Thank you.

Kieran, tasha, Evie and of course... Myah 

Xxx