Diagnosed with NF1 at just 12 weeks old, it has been a long and difficult journey for Spencer and his family since receiving that devastating news and learning everything they can about what it means to live with a Neurofibromatosis diagnosis.
At the fragile age of 3, Spencer was diagnosed with Neuroblastoma, a children’s cancer, that required immediate treatment. As with all NF patients, the hospital became his second home. Spencer progressed through oncology, and multiple CT & MRI scans where they discovered that the large Plexiform Neurofibromas located at the base of Spencer’s neck had grown and was causing physical deformities and potential issues with the bone.
In 2017, at age 9, Spencer and his family opted to begin the large process of debulking or removing the largest of his tumours. It commenced with the insertion of balloons on Spencer’s temples to help stretch the skin to give them enough coverage to remove a large section of the back of his head. It was a long surgery, but seemingly uneventful and his family were hopeful that it was a huge success.
Sadly, the next 12 months was filled with endless hospital stays, whole days spent in theatre and countless hours in traction to attach a halo. Despite the combined knowledge and extensive experience of his surgical and specialist team, Spencer had had an unforeseen complication which resulted in his head destabilising and falling.
This caused his spine to pierce the base of his brain with all the newly stretched skin on the back of his head completely dying, leaving an open and severely infected wound across the whole back of his head.
Spencer began the lengthy journey of traction, multiple surgeries, a spinal fusion, new skin grafts, and on top of that, learning to walk again.
Despite all of this, Spencer won the hearts of his village with his inspirational view of life.
Then came 2018, when Spencer was 10 years old, the surgeons broke the news that he had another tumour in “tiger country”. Placed between his windpipe, jugular & carotid artery, it was growing and impacting these vital vessels. Again, surgery led to more complications that saw Spencer through another long recovery.
Skipping forward to 2019, Spencer’s Mum Zoe says...
We are back on track. He is better than ever, and we are finally able to raise awareness and give something back to this condition that has changed the future of my son."
Team Spencer was created in support of this inspiring 11 year old who was born a fighter and a NF Hero.
Spencer still has well over 20 tumours in his neck, chest and on his central nervous system. What does the future mean? Spencer and his family don’t know. NF has already affected his hearing, his learning, his speech, his physical capabilities, but one thing it hasn’t changed is his spirit and outlook. He considers himself lucky and boy is he inspirational.