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Written by Mumma of Wolfe, Kira:

“On the 12th of October, my friends and I are commencing a 100km walk on the Heysen Trail, starting in Cape Jervis and ending in Mount Crawford. We aim to have this hike completed by the 20th which means we will need to cover roughly 15km per day.

The aim of this fundraiser is to raise money for cavernoma research and to support individuals and families affected by this condition with the many resources that the Cavernoma Alliance has to offer.

In October of 2021, my then 3 year old son was diagnosed with a 3cm cavernoma in his midbrain after presenting with a myriad of concerning symptoms. He developed hydrocephalus, a tonsillar herniation and syringomyelia (cysts within the spinal cord) as a consequence of the cavernoma obstructing the natural flow of cerebrospinal fluid and had to have a VP shunt put in. Following this procedure and a biopsy, he resumed developing at a normal rate.

In late 2022, he began presenting with concerning symptoms again. In addition to this, routine MRIs had identified multiple intra-lesional haemorrhages. Because of the repeated bleeds and the risk of a larger, life threatening haemorrhage, he was scheduled for the resection that we tried to stave off for over a year. This was to happen on the 9th of March 2023. On the 1st of March his kindy called to inform us that they were very concerned about him because he’d had right sided weakness and slurred speech. We took him to the ER where he tested positive for RSV and we were sent home. On the 3rd of March he vomited and we returned to the ER where they did some scans, revealing an acute haemorrhage.

We spent the days leading up to his surgery in the ICU where his consciousness and vitals were significantly impacted by the bleed.

At 8am on the 9th, he went in for the resection. He returned from surgery at 6pm that night. He did not wake up for a long time and when he did, it became obvious that the resection had left him with life changing deficits. As he became more conscious, the severity of the situation revealed itself. He had lost his mobility, ability to speak, eat and drink. He had a third cranial nerve palsy and was unable to open his right eye. 3 weeks post op, he developed extra pyramidal movements that affected his whole body including his face. We spent 3 months in hospital before getting to go home. He still has not regained his ability to speak but is now able to walk, eat and drink (on modified food and fluids).

When I was 2 years old, I was diagnosed with cavernous malformation syndrome myself. In the 90s it was not a condition that anyone knew much about and I vividly remember feeling so alone. Having experienced the condition myself and experiencing my son’s journey has made me value the resources that are available to those going through this. Unfortunately there are not too many but the Cavernoma Alliance is one that I have utilised in many different moments in mine and my son’s life. I would like to raise money for the Cavernoma Alliance so that they can continue to research and support others who are affected by this.”