Financial, love and support for Jamie-Lee, Trinity & family

Hi, my name is Sophie and I have created this fundraiser to support my friend Jamie- Lee, her partner Trinity and their beautiful little family during a very difficult heartfelt time. Jamie-Lee and Trinity are the devoted and loving parents of Aviya-Lee, Alaya and their beautiful newest addition, miss Haven.

Beautiful little Haven was born on the 25th of February, she has experienced complex medical conditions, after a difficult birth she has spent everyday in hospital and has since been diagnosed with an extremely rare genetic condition called Schaaf Yang Syndrome. SYS, is very rare, requires a high level of management for her symptoms and supportive care and moving forward will require intensive therapies. Currently, it is estimated that there are about 250 people diagnosed with Schaaf-Yang syndrome worldwide.

Jamie-Lee and Trinity have not asked for this help. But as a friend and witness to their journey I have seen the toll that these long months have taken and I could only imagine the financial burden they must be silently enduring. The changes they have made to be close to the Hospital, juggling jobs, temporarily moving their little family in order to be by Havens side as much as possible whilst learning about their little girls condition and care moving forward, I just know this little family is very deserving of support and love.

Your contribution can lighten the burden, helping to focus on the most important task at hand-caring for Haven. Let's rally together and show Haven and her parents the power of community support.

Thank you for considering a donation for Havens current and future needs. Every bit helps for Havens ongoing costs and is immensely appreciated by her family and friends.

Please see below a message from Jamie-Lee and Trinity:

Haven was born premature on the 25th of February, she was born via c section and wasn’t breathing at the time. She then was put on the ventilator till she became strong enough to breathe on her own but still with support.

She has had respiratory issues since birth, and is still continuing to have these issues and more.

We then got transferred to Queensland Childrens Hospital where specialist were involved, endocrinologist, neurologist, paediatricians, doctors, respiratory and much more…

Doctors were adamant she wouldn’t make it. Our baby has fought since she was born.

Until we done our own research

She was diagnosed with a rare genetic condition called Schaaf-Yang Syndrome (SYS) at 1 month old, it is a very complex syndrome with too little awareness to it. This was totally overwhelming for us as pregnancy was healthy, they never picked up anything to pre warn us, we had lots of tests done but everything was normal, we were eager to meet our healthy baby girl.

It has taken a massive toll on us mentally, physically, emotionally and financially.

We are still navigating how to process this aswell as still being the best parents we can be to our girls Aviya-Lee, Alaya and our beautiful Haven.

Our little family still have a long journey to go, Weve had to make some big changes around haven being in hospital, We are living in the city for the time being at the Ronald MacDonald foundation, Trinity travels to work, and works night shift, We’ve had to change daycares for the girls to cut travel time for me so I can care for Haven.

As Haven grows bigger, and gets stronger we continue to process and learn more about our baby girls syndrome and do our bit to bring our baby girl home to her baby sisters