Noah’s Brain Surgery
Donation protected
Hi, my name is Lauren. My partner Ryan and I met Noah and his family 6 months ago at Ronald McDonald House where they were also staying during one of their many visits to Adelaide for specialist appointments.
Noah is 9 years old and full of life, how ever his life has not been an easy one and now he is facing yet another battle. Recently they had another trip to Adelaide for an MRI which unfortunately revealed that Noah requires an urgent and unexpected brain surgery to make more room at the base of his brain and spinal cord as he has a fluid filled pocket on his spinal cord in October 2023 - which is just a few short weeks away.
This surgery means that the family of 4 need to come to Adelaide and stay here for the lengthy duration of his procedure and recovery.
We have formed an unimaginable bond with this family and would love to help raise funds to support them while they are going through an extremely difficult time and having to be so far away from their home in Whyalla.
If you aren’t in a position to donate please share his story and the link around to raise awareness and fund for this amazing family.
Thank you!
Here is a little bit about Noah’s Journey from his mother Bree and some links to stories about him.
NOAH HALLAM:
Was born at 37 weeks with Hydrocephalus. At 3 months old Noah went for a routine check and his fluid on his brain had spread from one part of his brain to 3. We were sent to Adelaide to attend Neuro Surg Clinic at Women’s and Children’s Hospital. We underwent CT scans and MRI. With the results our Neuro Surg Team said they were stepping back and sending us to Craniofacial as Noah had a fused skull know as craniosynostosis. Noah Skull was completely fused when he underwent his very first brain and skull surgery at only 7 months old on the 7th of April 2015. During this surgery he had complications as his brain was under that much pressure when they removed the back part of the skull to repair it he had a major bleed.
In May 2016 we went down to Adelaide for a usual MRI to check on his fluid. Unfortunately that scan never happened we ended up in Emergency the morning he was supposed to have this done at 5am. Noah underwent several tests and they couldn’t figure out what wrong after lengthy talks with his Neuro Surgeon Dr Molloy and Cranio Surgeon Proff Anderson it was decided that he would have ICP monitoring done. He underwent surgery to have a probe put into his brain and monitor the pressures when they spiked. His spiked more when he was asleep and also when he wasn’t moving. Normally it spikes while awake and moving. It was agreed that Noah need to have a VP shunt inserted in to his brain which is fed under his skin and dumps the fluid into his stomach when his pressure spiked. This surgery was in June and we were allowed home a week after but had spent 21 days in hospital. We thought this was the end of brain and skull surgery but unfortunately that wasn’t the case. Noah’s Neuro Surg Team advised me in April 2017 that he had Chiari Malformation- Noah’s brain protrudes down in with his spinal cord.
Noah needs to have MRI and CT scans done yearly to check his shunt. We have had to have several sleep studies done as Noah also has obstructive apnoea and also central apnoea so that means one he snores and two he stops breathing. Our recent sleep study revealed that Noah snored 326 times in one night.
Noah was also diagnosed with Cardiofaciocutaneous Syndrome (CFC). This is a disorder that affects many parts of the body, particularly the heart (cardio-), facial features (facio-), and the skin and hair (cutaneous). Which Noah has the Kras gene (<2%) Noah’s is unfortunately quite rare with only 60 People in the world currently diagnosed with the kras gene
He has also undergone major brain/skull surgery for his Chiari 1 Malformation- this is where his brain protrudes down in with his spine. They have said they will remove c1 and possibly c2 of his spine. Remove the back part of his skull and makes more room for his brain.
Which he will be undergoing this procedure again in October 2023.
Organizer and beneficiary
Lauren Graham
Organizer
Adelaide, SA
Bree Hallam
Beneficiary