Join Sonaara's Fight for Health with Hydrocephalus

As many of you know, Sonaara has hydrocephalus, acquired by an AVM rupture in 2011, and has a VP shunt to manage her hydrocephalus. She has been very lucky to have had few health issues related to her hydro for the first 10-11 years.

Unfortunately, the last two years have been a rough road for her. She had three surgeries related to her hydro last year, and we thought we were in the clear. In April 2024, things started to go awry again. She was admitted to hospital for a week in October with severe pressure/pain, where were found that her ventricles were nearly collapsed. She had been so severely overdrained that she has slit ventricles, which has caused her to develop slit ventricle syndrome (SVS). Her ventricles are so small that at times they collapse around the catheter in her brain, and this causes spikes of intracranial pressure because the fluid cannot drain. It could cause it to become clogged and require replacement(s). SVS is notoriously difficult to manage, and sometimes irreversible.

Sonaara was in her third year of college in August but has had to medically withdraw from school due to ongoing medical issues and constant pain/pressure in her head. We did not feel the medical team she had in place was considering the best options for her. But, after seeking second, third, and fourth opinions, we have found what we believe to be the best team available to her at Mayo Clinic in Jacksonville. This means a lot of travel, hotel stays, among other bills. We have traveled to Mayo several times already, meeting her new team and developing a plan.

Our first step will be a small surgery to replace her current valve. Once this is placed, we will be attempting to fluff out her ventricles by decreasing fluid drainage from her brain. Unfortunately, based on past experience, we know this will not be a very pleasant experience for Sonaara. But, the possibility of getting her ventricles to expand will be better for her in the long run. This isn’t a guarantee, as her ventricles are rigid due to the length of time she has been shunted and we have witnessed prior they do not expand easily. This will require a lot of visits to Mayo for shunt adjustments and follow-ups.

Our hope is to get Sonaara well enough to go back to school, work out at the gym again, crochet her heart out, and get back to her usual pain-free, happy self.

If you know me, Sonaara’s mom, you know I hate asking for help. But, due to the growing amount of debt incurring quickly, I feel I am out of options. We want to continue with what I believe is the best team available to her, and if I have to swallow some pride to make that happen, here goes.

Please pray for my girlie to get a complete recovery from SVS, or at least a manageable level that allows her to continue on with normal life pain-free. I will update her journey as we go.