Team Skye

Here is a bit about Skye and why we are joining CONQUER NF IN COLOUR.

Skye was diagnosed at quite a young age with NF1. We started to notice these weird skin spots/discolorations called café au lait spots all over her body and we noticed that she wasn’t developing as quickly as other kids especially with her crawling and talking.
Knowing that Skye’s father had NF and what the café au lait spots were, meant that we could go to the doctors and tell them about the symptoms that Skye had and that her father has NF. From there Skye had her first MRI and a blood test during her scan confirming that she had NF.
NF has had a huge impact on Skye’s life and also the people around her.
It is hard seeing your daughter struggle with her development and see the frustration she gets when she struggles to do things and when she is trying to tell us something and we can’t understand exactly what she is saying.
It takes a toll on you as parent having to make it to all of these appointments and hospital visits and having to see your baby put under anesthetic to go in for MRI’s, it can be very overwhelming.
Skye & her Mum Tara are very lucky to have a lot of family who support them and help with everything that they can.
Skye has had multiple MRI’s done at the Canberra Children’s hospital to monitor the growth of a tumour that was found behind her right eye. We found out after her most recent MRI that the tumour has stopped growing if not gotten smaller. This is really good news as it takes a lot of stress away worrying about what if she has to have it removed and she loses her vision in that eye and it also means less hospital visits and less MRI’s and anesthetic.

In addition to helping provide practical support for those impacted, your donation will help fund promising research to improve treatment options, and eventually lead to a cure.

Please help us reach our goal by making a tax-deductible donation.
Together we can #CONQUERNF