Silent Angel Kaylah

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)

Category:

People & Blogs

Tags:

• Rett
• Syndrome

[ShabbaMama]

aww she's so pretty she looks like both parents

[DiamondDijana85]

Oh thank you so Much...

[kpad2]

Such a beautiful girl! My daughter was diagnosed in January this year, although I suspected for a long time. She is also three and unable to sit unsupported, weight-bear, does hardly make sound. We're in QLD but we'll go to the clinic at Westmead in June next year for the second time. We might meet each other sometime down the track:)

[DiamondDijana85]

Hello kpad2,

Thank you so much for your compliments... I also watched your Video of your Beautiful Lil Angel she is so cute, o sorry to hear that she also has this horrible disorder. I myself have to go to the Clinic but in May... I would love to meet with you and your family i think it would be a great....

Thank you again and take Care... Give a kiss to your little Angel for me...

Always Dee

[steadmanclan]

I think your daughter is beautiful! She reminds me of mine! My daughter has Rett Syndrome as well.

[DiamondDijana85]

Hi Steadmanclan,

Thank you for your compliment,

Its so sad to hear how many little gorls have this Horrible disorder im so sorry to hear that.. How old is your Daughter?

Take Care... Always Dee

[KuroKinezumi]

But then I guess your cousin doesn't have a genetic disorder either.

My sister is four and has Rett syndrome and still can't walk on her own. But she's trying her best:)

[LittleChick19]

i think she's beatiful. She may not be perfect to other people, but you are so lucky to have such an adorable little girl.

Love Always. Xx

[angelachannel]

What an Angel! We will pray for this beautiful little girl and for her healing.

God bless you little Kaylah & parents.

[Megtunes]

What a beautiful family and video. Even though your daughter doesn't speak with words, she has taught at least 30,585 people about retts and about love.

[dazzlingBLINGbug]

Hi Dijana, just love your video. Kaylah is stunning and that smile.... oh, she is just gorgeous. What a beautiful little family you are.I can't imagine how hard life must be for you and am sorry that you have to go through all of this. I pray for a cure for this disease and that Kaylah is blessed with a miricle. I will continue to pray x x x

[gymnastgirl131]

I have an adroable little cousin that has retts syndrome and the doctors said she would never talk but now she is saying words like mommy daddy rileigh kindley and she is the only one of her diasese that can talk!!  I LOVE MY COUSIN!!!!!!!!! SHE IS A BLESSING FROM GOD TO MAKE ME A BETTER PERSON!!!

[TheM1NN13]

<3 :-)

[26sajdah]

@lioralourie2 hello! i just recently heard of this research after taking my daughter (with retts) to the neurologist! i am so excited. about your daughter with down syndrome my sister had down syndrome and was everyones FAVORITE! she was so sweet and independant. she graduated from high school and worked. they are so much fun to have around!!!

[26sajdah]

HI! YOUR DAUGHTER IS SOO BEAUTIFUL! THEY REALLY ARE SILENT ANGELS :) MY DAUGHTER IS 2 AND WAS DIAGNOSED THE DAY AFTER MOTHERS DAY 2010. ITS BEEN VERY HARD FOR ME SEEING MY CHILD GO FROM AN AVERAGE CHILD TO A CHILD THAT IS SOLELY DEPENDANT BUT, LIFE GOES ON SHE MY ANGEL AND SUCH A JOY TO HAVE. THEY ARE THE SWEETEST LITTLE ANGELS YOU COULD EVER HAVE :))

[lornasnail]

She is beautiful lots of love to you all xxxxxxxxxxxx

[lioralourie2]

for those suffering from Retts: I just saw several videos on Youtube about stem cell treatments for Rett's, search for retts reversal and retts before after treatment to find them. I have a daughter with Down syndrome but there are not that many success stories. Rett's there are. The neurons are not damaged and function returns very quickly (see youtube video called Rett Syndrome Reversal Summary)

[spearthrowers]

god bless u angel *tear*