We have created this crowd funding campaign to support our young little niece Hayli and parents during this difficult time. In September 2014 it has been confirmed that Hayli has a tumour in her brain stem. According to the doctor it is not possible to remove the tumour by any surgical means. Making this very hard for her parents as they can not help her. It is also the same for the rest of the family. We have seen among others that her movements and vision slowly (at the moment it is temporarily) lose it functions. There were times that she can hardly walk straight without support and more.
As we have trouble to understand the situation, the doctor gave us the following explanation. The brain stem is the most important part of your brain as it gives you full control over your entire body. As healthy people consider it normal that you can move, see and feel, it is difficult to understand how it is until you meet someone with this kind of condition. We have learned this in a hard way, which we do not wish it happens to someone else loved one. Due to the tumour, which acts as a bottleneck, the signals send from the brain cannot reach its destination. As the signal cannot make the connection with the body parts, your body cannot act like you want to. The bigger the tumour gets, the bigger the bottleneck gets to be and more often the body functions start to fallout.
The doctor told us that a tumour near the brain stem is a really rare case. It is estimated that it happens to 250 people in the whole world. As the number of cases is small, making it hard to have financial support for research. The doctor concluded that she will have a limited lifespan.
However, we have heard stories about an alternative way that gives us hope. The story we have heard is about a Chinese doctor that can provide medication to remove the tumour. We have confirmed the stories as heard. As long as there is hope, we have to seize the opportunity. No matter how small the chance, we have to help Hayli to get her back on her feet. The parents started to get the medication on a monthly base. Using it on prescription, the medication seems to be doing what have been heard. However, the medication is expensive and financial support is welcome. If we can raise a large fund, we want to use this to help others in a similar situation or fund research.
A little more about Hayli as we know her:
Since Hayli was still a baby, she was giving us a big smile on our faces when we see her. She even manages to charm strangers with her smile. The charm that she had as a baby has grown even stronger and lovelier. At the moment, Hayli is a 6 year old sweet little girl. She loves to sing, dance and play with her cousins and friends. We are always happy to have her around as she gives us a happy mood and feel. From time to time you can see her do crazy and funny things. Like a teacher of her once said "despite her appearance she is someone who surprises you with her intelligence and skills". Hayli is loved by all and she is giving the love equally or even more back to us despite her young age.
With your help, we can support Hayli and parents during this difficult time.
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