Kaylah is a 3 year old girl and will be 4 in March, She cannot Walk or talk (only mumble), she cant even stand even whilst holding her up. She has been recently Diagnosed with a horrible disorder called Rett Syndrome on October the 26th 2007. It's a very long story how everything started but we were at our local GP for a checkup and she noticed that something wasn't quite right about Kaylahs head so she assessed her thoroughly and discovered that her fontanel was almost closed which it shouldn't be. Since then we have been through a bunch of tests, doctors physios, specialists etc and her condition was always unknown or the tests were normal but she wasn't. So back and forth we still went studying, testing etc until last year 2006 Kaylahs Grandmother came to find a Organisation whom specialise with Special needs children called PECAT- Parramatta Early Children Assessment Team and there discovered after more testing and assessments Kaylah had "Profound Development Delays" which basically meant instead of being 2 she was a 7 month old baby. Through them we received a referral to join an organisation called DADHC where Kaylah got a Physio therapist, Occupational therapist, Social Worker and Speech Therapist. we have been with this organisation since June 2006. They have become friends to us and all the staff there are so lovely and kind hearted. They do home visits, Activities at their office, Music therapy, Hydrotherapy lessons, Xmas parties and much more. We are all thankful and Grateful for everything their all doing for us. Kaylah has a lot of specialists since knowing there was something wrong like all the staff from DADHC and PECAT , paediatrician, Eye Specialist, a Dentist, Constipation Doctor, Neurologist, local GP (since i was pregnant with Kaylah). Some of the tests Kaylah went through since she was 4 months to find out what was the exact diagnoses were x-rayed on her hips and spine twice, 3 separate blood tests all with 5 tubes taken, ECG (Heart Scan), EEG(Brain Waves), MRI Scan on her head (Awaiting for a body MRI in Feb 08) Nerve Conduction Study etc and the last blood test was the result of Rett Syndrome. Tyson and Myself are awaiting an app for DNA to see if its in our Gene. Kaylah also had to have 3 plaster casts on both legs from knee to toe for correction on her heels and feet for AFO'S. Kaylah started to attend a mainstream Preschool in Feb 07 and goes 2 days a week and will continue until shes 4 where she will attend a Special Needs School. Kaylah is such a Beautiful little Placid girl who always has a smile on her face shes a Daddy's girl and she LOVES LOVES HI-5.I have become an official volunteer for the Australian Rett Syndrome Research Foundation and have been selling Angels for Angel Week and have already raised $2000, Kaylahs grandmother is also doing a Raffle at work to raise money which will go to the Rett Syndrome Clinic at West mead Children's Hospital Sydney and i will also be hosting a Charity Ball to also raise funds and hopefully will make around $30,000 and every year throughout the year i will also host more Charity Events to get closer to finding a treatment and Cure....Thank you so much for taking time to read Kaylah's Story....Sincerely Dijana (Kaylah's Mum)

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