Rise Up for Reilly

Reilly is 7 and lives in Shelly Beach, South Head. He is about to have neuro surgery. Please help him and his mother to give him the best recovery possible.

Reilly is going to have brain surgery mid Jan 2021, and his life won’t be the same again. This bright, spritely kid will have a lot to overcome and he will need to find a new 'normal'.

Reilly has a Chiari malformation in his brain, so part of his brain has slipped down into his spine. He has limited cerebral spinal fluid flow and a large cyst inside his spinal cord.

The surgeons are going to remove a horse shoe shape piece of bone out of the back of his skull, split the dura (sheath around his spinal cord) and they will take the 1st vertebral body of C1 off. This alone is a big deal, however as Reilly’s brain has slipped a little further down into his neck than they thought, unfortunately they are also going to have to take the 2nd vertebral body too. So that is a laminectomy of both C1 and C2. The atlas and axis of your body. Taking them away will leave Reilly’s neck incredibly unstable and vunerable, so inevitably he will get his neck fused.

The kicker to this one is also that due to Reilly’s age and the wonders of the human body the reaction will be to lay more bone down, so in about 10 years he will need this decompression surgery again. That will not be pleasant to put it mildly. However we cannot delay any longer due to the cyst (syrinx) inside his spinal cord.

Although this brain surgery will take months to recover from, our hope is that it will improve Reilly's breathing, chronic cough, fatigue, headaches, motor skills, balance, and back pain. We also hope that this surgery will reduce the large cyst (syrinx) in his spinal cord. This syrinx is destroying the integrity of his cord and could render him paralyzed in the near future should we do nothing, so now brain surgery is no longer a choice, but an absolute must!