Dyani has been my best friend for many years, she is the most loving women who has helped me through some tough times. Dyani decided to move closer to me from Adelaide to Noosa for a better life for her and her daughter Latecia, as she had been suffering depression. Depression is something that Dyani has been battling for many years since a workplace accident which left her with a broken back and in constant pain, made worse by the cold weather so the sunshine coast seemed like the perfect place to relocate.
Shortly after the move a guy she had been seeing came to Noosa to be with her. She was vulnerable and he must of been telling her all the right things, from the moment I met this man I knew it wasn't going to be a smooth relationship. But as a friend I could only stand by her side. Dyani is the most loving mother and when her second child was on the way with her new partner she couldn't have been more excited. Even though her relationship troubles had started to show she had a semi normal pregnancy until close to the end when she was suffering Pre-eclampsia which resulted in her having an emergency C-Section. I was at her bed side the moment she was back in her room.
Lehaylah started having breathing problems and after taking Lehaylah home from the hospital Dyani started to notice feeding difficulties Leyhayla was having and the breathing problems getting progressively worse. After a few weeks at home it was becoming noticible that she wasn’t growing and gaining weight at the ‘normal’ rate of other babies. Dyani took action and started taking her to doctors and specialists questioning why she wasn't progressing as other babies of her age.
So test's begun, but it was a long road of ruling out many medical conditions until she would get properly diagnosed.
At the time Dyani was  still living in Queensland close to me, but her partner who was very controlling over her decided they move back to Adelaide. So they packed up and went back, I knew something wasn't right when I would ring and she would be upset 24/7, her partner had become mentally and physically abusive to her in front of the children and at the same time Lehaylah was having more and more medical problems. Today Dyani is on her own as a single mother of two children, she did what was best by leaving an unsafe environment. 

Lehaylah has only recently been officially diagnosed with a very rare  Cornelia de Lange syndrome. I can't  even imagine how this could feel to be told this is what your baby has. This Syndrome is rare,  it's occurrence is 1 in 10,000 to 30,000.
This is a full time job for Dyani who has no opportunity to go back to work anytime in the near future, if at all and she has absolutely no financial support from Lehaylah's father. Lehaylah does get some disability funding which only just covers her therapies that she has on a daily basis, she is always in and out of hospital and has to wear an oxygen machine at night so she is able to breath properly.  
I'm aiming to raise enough money for Dyani to buy herself a little car which can fit Lehaylah's special wheel chair pram in the boot as its bulky and also be able to get her to therapy every day, as the car she has had  for many years has finally died and she has no money or means to be able to replace or fix it. Also I know she would really benefit  from being able to attend a CdLS conference that is going to be held in Sydney later this year. I want to help Dyani increase awareness of CdLS as its rarely spoken of in Australia, only 5-6 cases we know of in SA where Dyani lives.
So please help me spread the word on this syndrome and if every one can dig deep and donate a couple of dollars to support this queen and her beautiful children it would mean the world to them and give Dyani a kick start to providing the best life prossible for Lehaylah. 

Lehaylah's symptoms of CdLS

Synophrys (eyebrows, mono)
Long eyelashes
Thin downturn lip
High arched palette
Communication delays
Bowel abnormalities
Gastroesophageal reflux disease (which means she vomits every meal up) and she screams in pain
Heart defects
Feeding difficulties
Hearing loss
Intellectually delayed (she will more then likely never speak)
Delayed development
Breathing difficulties
Behavioural issues include, Self-injury / head banging, compulsive repetition
They do not know the life expectancy of this syndrome.