LJ’s fierce fight against DIPG

As so many of you already know.. On the 8th May, 2019. Our worlds were completely shattered and our hearts so quickly torn apart, as we received the news that no parent should ever have to hear.

Our beautiful, kind hearted and energetic 12 year old daughter Laylah was diagnosed with a rare form of Incurable and Inoperable Brain Cancer, DIPG. Diffuse Intrinsic Pontine Glioma.
The four most soul destroying words on the planet. 

Just 4 weeks prior to Laylah’s diagnosis she was out living her best life, doing everything that a pre-teen does. She had just begun High School and these were meant to be the best days of her life.

With the onset of sudden headaches, dizziness and balance issues we knew things just weren’t right, she wasn’t her fun loving self. We requested an Emergency MRI from Laylah’s GP. From then on, we have been thrown onto what feels like a nightmare roller coaster.

Laylah has undergone Biopsy Surgery, 6 weeks of Radiation Treatment,  has had several MRI’s, endless blood tests, she has taken several Chemotherapy trial drugs and has had numerous stays in hospital due to Immunosuppression and Infection.  

She has endured more emotionally, mentally and physically at the age of 12 in a 7 month time period, then most will battle with in their whole life.

We have been seeking advice, 2nd, 3rd, 4th, 5th, 6th opinions from all over the globe. So desperate to find any answers we possible can for our girl. Leaving absolutely no leaf unturned and absolutely no questions unanswered.

Over the past 4 weeks Laylah’s health has deteriorated. Her symptoms have returned. She requires a wheel chair to go out, is very fatigued, has lost the movement of her left side and has begun having frequent headaches. This has rocked our world all over again.

Laylah’s most recent MRI scan last week has shown that her tumour in fact is bigger, her ventricles are enlarged and there is now a block in her brain fluid. Words cannot possibly express the pain we are feeling as a family.

As this journey continues to throw us more and more hurdles each day. We have created this updated GoFundMe page as all current interventions are expensive and not rebatable by Medicare.
Like any parent, if such therapy becomes available in time for LJ, we would give anything to get it for her. At the current time she is receiving experimental drugs from overseas that are costing our family approximately $2,000 a week.

Your support, kind words and generosity mean the world to us. Thank you for joining in on our journey and helping us give our girl the best chance at fighting this aggressive brain cancer, that no child should ever be up against.

All our love and heartfelt thanks,
Kiera, LJ and our family x x