Hope for Olivia.

Kelly and Nigel live in a small regional town in Victoria with their girls Olivia 17, Leah 13, and Holly 10.

Olivia, their oldest was born with (which doctors have only just diagnosed this year) FOXG1 syndrome. This syndrome leaves Olivia wheelchair bound, non-verbal, and PEG fed. Along with these she has a string of other medical complications like epilepsy, microcephaly, and scoliosis.

As you can imagine Kelly and Nigel have spent a lot of time in and out of Dr’s offices, medical appointments, and hospitals.

Since the day Olivia was born Kelly and Nigel have had to fight. Fight for Olivia’s quality of life against the NDIS. The most recent being modifications for their new home and more specifically, a new wheelchair for Olivia as she has outgrown her current one. This wheelchair enables Olivia to go from a sitting to standing position so she can not only socialize with her family and friends but also to help her respiratory system, blood circulation, muscle spasms and to reduce muscle stiffness to name a few. This wheelchair has been recommended by her pediatrician and occupational therapist. The NDIS have denied this chair. This isn’t just a wheelchair, this is Olivia’s legs, a chance to improve her quality of life. The sit to stand wheelchair costs up to $60,000. In my perception the NDIS is responsible for this cost. This is above and beyond what everyday families should expect to budget for. Isn’t this the reason for the NDIS? To fund the costs associated with disability!

She outgrew her wheelchair a long time ago and had it modified to try and fit HER into it. We have followed all the processes, begged for help from federal and state politicians, started again with all the different requests being met with no results, NDIS will not discuss the issues with 3AW who have attempted to help. It took 2 years of fighting NDIS to have an overhead hoist and mods for her bathroom approved. These were essential items for Olivia that took two years of persistent fighting to have approved. The process was so long they needed to find a new builder as it was so time consuming. Where does Olivia’s family go next? Olivia needs a new wheelchair NOW.

Don’t get me wrong, the NDIS is a great support for many families, but it is just not working for Olivia. Her family are so tired of fighting but continue to do so every day. We can’t wait two years for a wheelchair and hope that it is approved. The additional stress and pain that this causes is inexcusable and needs to be fixed.

Moreover, she is currently in hospital after receiving major surgery to straighten her spine which had a 69% curve! This has caused damage to her rib cage and crushed her left lung. She is now receiving round the clock care including physio, high flow oxygen and numerous IV fluids to fix the damage her scoliosis has caused to her body. Her left lung has collapsed multiple times and just does not seem to be responding to treatment. Kelly and Nigel are currently not working to be by her side. You can imagine the financial pressure they are facing!

If you have had the absolute pleasure of meeting our beautiful Olivia, you would have been greeted with the most joy filled grin, cheeky personality, and eyes that fill you with hope. If she likes you, she will reach for your hand and use her DynaVox to communicate to you. If she doesn’t, she’ll roll her eyes and give you the silent treatment. Typical 17-year-old, right?!

It breaks our hearts to see her, and her family continuously fight so hard. Fight for her quality life. Something most of us take for granted every day. So, we have created this page to help cover some of the cost for her new wheelchair and to help ease the financial burden Kelly and Nigel are facing.

It is a tough ask, but if the organizations who are there to help won’t, we must believe that we can achieve this for Olivia and find a way to give her the best life she deserves. Together we can give Olivia hope. Hope for a future without pain!

We are so grateful for your generosity and support.