Support Spencer’s family and his legacy

Since Spencer’s passing, his family are determined to fight against this horrible disease and ensure no families go through the pain and struggles that they endured.

Stayed tuned for update's shortly.

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Spencer is a smart, bright, intelligent, kind, caring and energetic 5 year old boy who loves Spiderman, Marvel superheroes, and jumping on his trampoline. He began school this January 2023 and has the world in front of him. He is a happy and confident boy who is looking forward to his amazing life ahead. However his world - along with his mother Laura, father Scott, and big sister Indiana’s lives - recently turned upside down.

On 3rd July 2023, Spencer was diagnosed overnight with brain cancer - Diffuse Midline Glioma (DMG) also known as Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is an aggressive type of brain tumour, which due to the level of aggressiveness and the ability of it to invade neighbouring tissues, is considered an incurable, inoperable brain tumour that has a 0% survival rate.

Spencers initial MRI shows the mass is in his brain stem. This grows rapidly, eventually squeezing and damaging the healthy brain tissue. This part of the brain controls vital bodily functions including breathing, swallowing, speaking, toileting and moving. Surgery is not best practice for patients with DIPG due to its location in the brain stem.

Spencer completed a short, high dosage course (3 weeks/13 sessions) of radiotherapy treatment. He had to be under a general anaesthetic each session. The aim was to shrink the tumour and ease his symptoms. This is not deemed a cure, it will offer a temporary reprieve. The benefit of this treatment is that it has allowed Spencer to return with his family to his home in Aldinga, South Australia. This treatment enabled Spencer to regain some function including talking, eating and using the left side of his body.

Laura and Scott's decision to become full-time caregivers is a testament to their love and dedication for Spencers well-being. It's heart-wrenching to see the challenges that Laura, Scott, Indiana, and Spencer are facing. The potential opportunity for Spencer to participate in a clinical trial at home or interstate may offer hope and a chance to extend his time and improve his quality of life. Transportation and mobility are critical factors in this situation. Spencer is currently unable to access the community, including school. He has hemiplegia resulting from complications of hydrocephalus. Some options that might help the family with their transportation and mobility include access to support, therapies, equipment and an accessible vehicle.

2 weeks ago Spencer was approved access for funding -however this week, they were told that because he has a life limiting disease he will not receive any financial support, despite being 5 years old and now living with neurological and functional implications.

We are all so devastated and mostly angry beyond words at this news. He is now disabled and needs support to get out and live, the family are not asking for support for him to die. They also have another child who needs to be cared for whilst this is all happening.

Spencer can’t walk and needs a wheelchair to get around. He needs 24 hour care and lifting in and out of bed/chairs. He has no safe way of getting out of the house and into the community. They have no foot paths where they live, surrounded by bush land and water. He is back in nappies again at night and at times during the day. He is being told to just stay at home and wait to die. This is not right and the family have been let down.

This family has already had so little time with their beautiful son in his short 5 years to make family memories. We are asking for financial support to enable this amazing family to stay together and spend every single moment together and not miss a thing without the added burden of financial stress.

While the challenges they're facing can be overwhelming, the love and care they're providing for Spencer are immeasurable. This request is about finding a balance between addressing practical needs, that never go away and creating moments of joy, love, and connection. Even in difficult times, the bonds created through love, compassion, and shared experiences leave a lasting legacy.

So as friends of Spencer, we are seeking support from friends, family, and the community to help lighten the load and provide opportunities for them to focus on what truly matters.

Follow Spencers journey via https://www.facebook.com/profile.php?id=100095145283094