Isla's second brain surgery - The Isla project

On behalf of Jimmy, Isla and Tilly we are reaching out to you for support and assistance towards a dear friend who is currently facing an incredibly challenging situation.

Jimmy is a devoted single father who is facing a critical moment in his life. His daughter is scheduled to undergo a second major brain surgery, which requires them to travel interstate. This is an emotionally and financially draining ordeal for him, and he deserves our help and some respite.

Jimmy was always there for my family showing his support and guidance through our tough decision and journey. This is the least I can do to help him. We all look up to Isla and she is one of our leaders.

In order to be there for his daughter Isla during this crucial time, Jimmy needs to take time off work. Unfortunately, this will result in a significant loss of income for him, adding to the financial strain of ongoing bills and travel expenses.

With the unknown time needed spent interstate, accommodation, food, travel expenses, we are asking for anything you can do to help Jimmy have less stress during this unimaginable stressful time. Unfortunately the bills at home don’t stop and with the long recovery time even after returning home Jimmy will need time off work or to work part time as he is a single father of two beautiful girls. Isla is not able to return to school full time and her physical activity and risk of injury needs to be minimised as Isla needs full time one on one care for a long period of time to ensure she is safe, her brain is protected, so her body and skull can make a full recovery.

Isla was diagnosed with a rare brain disease in April 2020 and in September 2020 she had a functional hemispherectomy (disconnection of the R/H hemisphere of her brain). The surgery was a successful procedure, Isla's recovery has been an absolute blessing. She has kicked goal after goal and still continues to progress.

Unfortunately in April this year they noticed Isla was experiencing some unexpected head pain, obviously with her complex medical history they couldn't take any risks and they continually rushed her to hospital to seek answers. The Royals Children's Hospital in Melbourne soon took charge and requested some testing. Since May Isla has had 4 EEG's, an MRI and two IV steroid pulse treatments. Isla was also placed on Topiramate (an anticonvulsant/migraine medication).

The seizure activity on the disconnected hemisphere is the root cause to this pain, one of Isla's EEG's showed 55 seizures in two hours... Although her right hemisphere is fully disconnected and Isla doesn't show any seizure symptoms, the problem is that the rampant seizure activity on her disconnected side is messing with the chemical balance in Isla's brain which is then causing her to experience these 'migraines' and pain which is effecting her day to day life. Unfortunately there is no way to minimise Isla's seizure activity as she has drug resistant epilepsy.

After all the data was collected and some informative consultations they have been advised that Isla requires further surgery. They have recently got date of the 31st October 2023 where Isla will undergo a second major brain surgery to completely remove her right hemisphere. Her first surgery was 13 hours, according to the doctors this surgery will be longer due to existing scar tissue and the incision will need to be bigger to allow for removal of tissue. Theoretically this procedure will eliminate any remaining seizure activity and in turn eliminate any migraines she is currently experiencing.

Jimmy has always had full faith in the medical teams advice, the Royal Children's Hospital are the best in Australia, if not the world and they have even more faith in their little girl to push through this next hurdle. Once again Jimmy is faced with a decision no parent should have to make or see their child go through, being torn between emotions and logic. However the decision is essentially out of their hands as once again Isla’s life is being dictated to by a brutal and relentless disease!

Life isn't fair sometimes and as a father of two beautiful little girls there is nothing more painful than watching a disease take over one of their lives. Isla has had two of the rarest conditions you could possibly think of and both conditions have had solutions so they are thinking positively and feeling lucky that Isla has access to some of the best medical teams in the world.

We kindly ask for your assistance in any way you can offer. Whether it's contributing to this fundraiser, providing emotional support, offering your time to help with daily tasks, or simply lending a listening ear, your support will make a world of difference during this trying period.

If you can spare a moment to reach out to Jimmy and Isla share words of encouragement, or make a small contribution to alleviate the financial burden, it would mean the world to him. Your kindness and generosity will help him focus on his daughter's recovery without the added stress of financial worries.

If you have any questions or would like more information on how you can help, please do not hesitate to reach out to Jimmy as he is so open about Islas journey. Together, we can make a significant impact on their lives during this challenging journey.

Thank you so much for your consideration and compassion. Your support will truly make a difference in Jimmy’s life and the upcoming stressful and unknown time, and bring hope during this difficult time.

If anything your positive vibes for the beautiful little princess Isla is the least we can do!

HOPE IN ONE HEMISPHERE

With deep appreciation,

Caitlin and Jordy, another Hemi family!