My beautiful girl was in a life and death struggle with cancer
If your child was diagnosed with cancer wouldn't you do everything in your power to help them not just survive but be able to thrive!
Jamie was suffering from seizures. We went to a children's doctor who suggested we see a psychologist. After almost a year, we gave up and went back to the doctor, who then sent us for tests. It was during these tests that they identified a large brain tumour that had been growing quickly. When the doctor sat us down, Jamie was sleeping in the waiting room. It was late at night, and she was exhausted. When the doctor said she has a brain tumour, I don't think I heard any more of the words coming out of his mouth for the next ten minutes.
In 2009 Jamie Lee was diagnosed with a major brain tumour. To be specific called an Ogliodendra Glioma. The survival rate of this tumour in children is 23%.
Statistics: Every year 1% of children are diagnosed with a brain tumour and 1% of 1% are diagnosed with the Adult brain tumour that Jamie Lee was diagnosed with.
The tumour is a very rare type of brain tumour and only affects 1 in every half million children.
What are Gliomas?
Glioma is a general term for a group of tumours that arise from glial cells, which help to support and protect the neurons in the brain. There are many different types of glioma including astrocytomas, oligodendrogliomas, ependymomas, and glioblastomas. There are a number of different types of astrocytoma including diffuse astrocytoma, anaplastic astrocytoma and glioblastoma multiforme. Glioblastomas are the most common type of primary malignant brain tumour in adults (R).
We were given only two options the choices were 1. remove the tumour, and she may die from the surgery or 2. leave the tumour, and she would die within 1 year.
Together we discussed what Jamie wanted to do. As her parents, it was essential for us to discuss the seriousness of this surgery. Jamie wanted to move forward with the surgery. We were going to try everything possible for her to beat this awful cancer. Even though we were all worried and worried is not a strong enough word for the outcome.
During surgery to remove as much tumour as possible, Jamie Lee suffered a deep brain stroke. Leaving her with a deficit down her left-hand side.
In simple terms, Jamie no longer could use her left hand and had to learn how to walk again. Both her eyes were damaged, and she is now partially blind in 50% of each eye. (The left-hand side.)
Jamie has a rapidly growing and aggressive type of brain tumour that is called oligodendrogliomas. It has an extremely low success rate, 22% which means 78% people with this type of cancer will die from it.
Jamie had her first chemo treatment after surgery, she has now completed her 2nd cycle of Chemo. Her brain tumour was still growing and the chemo was only making her worse. We worried about this massive monster in her head. The experts worked on an alternative to chemo treatments which just weren't working for her at all. Typically the type of chemo that Jamie was given has little effect on the patient with most kids still attending school. Jamie's body reacted to the chemo in a very negative way. The pores on her skin were exuding blood so she had to have two blood transfusion to address this reaction. Jamie underwent radiotherapy which was successful. Six and half weeks everyday she had radiotherapy which was the maximum she was allowed to have or she would not be able to remember to breathe. The radiotherapy was successful and Jamie proceeded to grow and is now 16 at the time that this is written. Life moved forward we still had our little girl.
As Jamie grew, she had more need for more adult things. i.e. a Bra. It was a struggle for her to put on a T-shirt bra, and I searched for something better.
I was at a Bra party one day and looked through a brochure, where I discovered there was nothing better on the market. This inspired me to dig deeper in order to discover something different. "I'm sure there is something out there; I'm just not finding it," I thought.
I started to search online for a product to address the issue that she really only has one functioning hand. I found an application for a Bra by Amy Jean Liguori Bra fastener US 20130065483 A1.
This was a great product; however, it did not solve the issue for Jamie Lee. I messaged Amy on Facebook requesting if she had been able to have this product made anywhere. I thought at least if I purchase it and customise it, Jamie would have something.
Amy responded to my FaceBook message, explaining that she had been unable to get the patent. She was herself a stroke victim, which inspired her to develop this patent idea. She too, had realised the limitations to the current bra configuration. She wished me well and provided her phone number in New York should we want to keep in touch. Before Amy's stroke, she was a designer for the lingerie industry based in New York.
This was so touching to identify with someone so very far away from Australia.
That's when I decided to design my own solution for this problem. Women were facing the same problem all over the world. I wanted to help women wear clothing with self-respect, just as my little girl can.
During the next six months, I spent every waking minute working on a product that was both functional and marketable. If I didn't create this item, no one would be better off than they are right now.
This was the start of my journey to create BraEasy.