Maya’s battle against Kabuki
I am trying to raise money for my niece, Maya, who has been diagnosed with Kabuki Syndrome. She is in the care of a very loving and devoted mother and a father that is trying to do his utmost to provide for his family. Maya has a beautiful older sister that’s 3 and a half and life has been very hard for this beautiful family. Kabuki Syndrome is a rare Syndrome that affects 1 in every 32,000 births and has only been discovered in the late 80s. Many people are unaware of what Kabuki is, however some link it to the Japanese theatrical make-up due to the high-arched eyebrows.
Before I list Maya’s current medical and on-going problems I want to make mention of the beautiful girl Maya is. She is one of the happiest babies and her smile is always there as you can see in the picture. Kabuki children are happy in nature so I think that is truly a blessing that she will go through life smiling even though she has suffered a lot.
The symptoms that Maya currently has I have listed in the link.
The reason I am raising money for her because she is going to need a lot of home renovations to be able to adjust to her medical needs. Money that I don’t have on my own to be able to allow Maya to live a life at home where her surroundings are safe enough without us having to constantly worry. Because of her condition having stairs, later on, is going to make it difficult as well as the space within the home. For instance, making entrances in the rooms so mum can keep a watch in the evenings and the door room wider in case later a wheelchair is required etc. The future is not certain but preparations are necessary. Mum and Dad currently share a room with Maya to always keep in check. Unfortunately, the family cannot just move as they are depending on one wage as mum is a full-time beautiful mum that looks after Maya and her special needs. She is left with little time to be able to do any work although she never complains and loves her children.
These are some of the specialists that Maya has to see:
- Speech therapy
- Respiratory and sleep specialist
- Ears, nose and throat
Maya and her family are truly a family that needs so much but survive on little whilst never making it obvious. They are never one to just open their palms which is why I have taken it on to start this fund as they need a lot of help. I will keep posting updates on Maya’s progress. Once I’ve reached the target I will make mention of what the funds were used for along Maya’s journey. Please share with as many people as you know and anything that you can give will be incredibly appreciated. There are not enough words to describe how much Maya has gone and will go through yet she always tries to keep a brave and happy face.