Kabuki awareness

I am trying to raise money for my neice, 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 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 is because she is going to need a lot of ongoing medical treatments and intervention. There is a vest that has been advised for Maya that is $20,000.00 alone. This is money that I don't have on my own to be able to allow Maya to live a life that so many children need not ever go through. Because of her condition there are a lot of future uncertainties that may affect her every day living. 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 afford some of the medical equipment that Maya needs and may need in future 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:
GP
paediatrician
Physiotherapy
Speech therapy
Neurology
Respiratory and sleep specialist
Ears, nose and throat
Genetics
Dietician
OT
Ophthalmology
Gastroenterology

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 is 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. Thank you everyone xoxo
This is the first video that the family watched about Kabuki
Maya has a complex case however she is on the less severe end of the spectrum

Maya has the following conditions:
Suck and swallow issues
Delayed swallow which causes aspiration- maya can only have fluids and medications from a nasal gastric tube and is due to have surgery for a PEG- she suffers a lot of trauma from the tube insertions to the nose and throat.
Microcephaly (which causes developmental delay)
Missing bones in some toes and fingers
A Missing vertebra of the spine
Possible scoliosis (they are still in process of checking)
Sleep obstruction and Central line disease
Malacia which means floppy airways
Immune dysfunction and constant respiratory issues and sickness
Absent seizures which may result into full blown seizures
Dental issues
Constant urinary tract infections
Constant ear infections she has been on antibiotics most of her life and is now having grommets to assist
Maya is currently being tested for severe lung infection
Hypotonia and hypertonia (floppy muscles and lax joints) intense physio to help her with her physical development
Allergic reactions to cows milk proteins and skin irritations such as eczema
Mild to moderate hearing loss in right ear
Signs of early puberty
Eye infections, blocked tear ducts and is getting checked for her squinting
She has a sacrum dimple and the area gets pressure ulcers sometimes
Sensory issues and sometimes noise aversions

There is still so many tests to do. We can only wait till she's a little bit older to determine behavioural issues such as autism or adhd.

She was a failure to thrive baby but now her weight seems to be tracking but it's something they have to manage closely

Maya's mum, Sophia, is trying to raise awareness for Kabuki Syndrome as well as the NG tube.