Let's Talk About Porencephaly
- karismakaleidoscop
- 2 days ago
- 6 min read
Before I adopted Topaz, I had no idea that porencephaly even existed. So if you are like me and have never heard about it, this post is for you. I am bringing awareness to it by sharing the experience I had with my cat Topaz who had it. So let me first start off by giving you the Google definition. Porencephaly is "a rare, congenital neurological disorder characterized by the presence of fluid-filled cavities or cysts within the brain's cerebral hemispheres." But what does that mean for Topaz, humans and other beings who have it? Let me explain it to the best of my ability... and I am going to start from the very beginning.
How our story started
It was the 19th of December 2023 and I was having a Davis Program session with one of the students at my school. During a break I went into the library, and our school's librarian told me that she saw a kitten at the stairwell the day before who did not look too good. I immediately ran down to have a look and I saw this tiny little tabby kitten with a plastic bag and paper surrounding him. I had no idea what to do. I picked him up and brought him upstairs. One of our school's cleaners told me to give him a little milk diluted in water to see if he would drink it. And he swallowed. I told her that after my class, I will take him straight to the vet, but all he had to do was hold on till my session finished. And hold on he did.
I got him to the vet and this wonderful doctor at the Gasing Animal Hospital named Dr. Kunam helped me. She said that he is very weak, but the milk with water probably helped him with some hydration. She immediately put him on a drip and told me he would have to stay at the hospital till he was stable. And that was that, he was taken and given the best care that he could possibly have.
The next afternoon when I came in his eyes were open and he was moving slightly. She told me that he had made good progress throughout the night but needs to be walking around and standing before she could think about letting him go home. Jump to the 25th of December, a Christmas miracle. I got a call to say that he could come back home, but I needed to give him a name so he can get his booklet and what not. So, since I grew up around jewellers, a smokey topaz came to mind and thus I brought home my one month old boy, Topaz.
How did we find out
Although Topaz had been discharged, both the doctor and I noticed that his fur stuck up like a porcupine which meant that there was somethign neurological going on and that he was unable to see in both eyes (Yes, Topaz with those beautiful big yellowish eyes, could not see the world). However, since he had made such good progress, the doctor felt a safe and loving home environment would be best. She explained to me how to administer his medication and instructed me on what to do if there was an emergency and sent Topaz home with a few good luck pats on the head.
A few days later he had a massive seizure and I had to take him back to the vet. After that, I brought him in every two weeks for the first month. And due to a few seizures along the way he was put on Keppra and a steroid. These medications did not stop the seizures, he got them every now and again, but they really did help reduce the amount of seizures.
When Topaz was around 6 months old, he was scheduled to do an MRI. The vet told us everything they found during the MRI and what that meant for Topaz. It was one of the most heartbreaking things I had ever heard in my life.
How did I take the news
I think the diagnosis was not the shocking part. It was what his vet said next that broke me. "From the looks of his size, we can conclude that he has some form of dwarfism. But the more concerning thing we found is that he has proencephaly. It is a rare condition. Not much is known about it especially for cats, but from my experience Topaz will have between 1 to 5 years." It was the most pin drop silence I have had to go through. Both the vet and I looked at Topaz, this cute little round ball of fur, who brought so much joy but had a time limit. The silence took a while to break. I think we both felt this feeling which was a mix of fear and uncertainty. The silence broke and we spoke about the next steps which were to keep doing what we were doing and we will adjust the medicine accordingly as he ages.
I cried all the way home. But I made a promise to him, that I would give him the best life imaginable, regardless of how much time he had with me, he would be loved, he would have fun, and his short journey would be filled with all the things he loved.
How long did Topaz survive?
Topaz passed on 29th May, 2025. His life on earth was just 1 year and 5 months. But that time on earth, although short, was the best time for our family and although I may be speaking on his behalf, for him as well. Topaz had an amzing doctor who made sure she monitored him every step of the way. She was open, honest and did not sugar coat things which gave us the reality as it was needed, so that we could make every moment of his specia, and cherish every moment with him.
Topaz reagrdless of his inablility to see, his condition (Porencephaly), stunted growth and developmental delays, he showed everyone around him that life needs to be enjoyed to the max. He made biscuts every morning, hung out with his sister Lucky, and made his humans laugh with his zoomies and cuddles. Even though his lifetime was short, he lived it to the max. He was sweet, silly and he lived fully alongside with his condition never letting a moment pass. He paved his way exaclty the way he felt he needed to. And Lucky and all of us were so blessed to be a part of his journey.
What did Topaz achieve?
That is a million dollar question and here is his checklist:
Lived with porencephaly
Got around and played with toys and his sister Lucky even though he was blind
Helped his sister Lucky, with her anxiety. She felt a true sense of calm around him.
Played hide and seek with Lucky
Was a quality checker for all DIY projects. He would sit with us for hours watching us build shelves and put together things.
Travelled to Melaka
Travelled to Cherating
Visited Kuantan
Went to Central Park in Putrajaya
Went to PD
Ate treats from St. Maarten
Went to Karisma's workplace and met her student who also has seizures
Sat in Karisma's staffroom and met the teachers
Helped humans become grounded
Lived life to the fullest
Porencephaly: Facts You Should Know
It is a rare brain condition where cysts form in the brain, often due to stroke, trauma, or development issues before or shortly after birth.
It affects both humans and animals, including cats and dogs. Every case is unique and outcomes can vary widely.
Symptomes may include seizures, motor delays, vision problems, or learning difficulties. However, some individuals live meaingful, joyful lives with the proper care and support.
Porencephaly is not always fatal. With love, medical support and understanding many can thrive beyond the diagnosis.
Awareness leads to compassion. The more we understand rare conditions like porencephaly, the better we can support and celebrate those living with them.
Porencephaly may leave a mark on the brain, but it never defines the heart, the soul or the capacity to love and be loved.
I hope this post gave you some insight on Porencephaly and that Topaz's story gave you some hope for people and animals with this condition. Till my next post, stay safe, take care, much love and respect. CHEERS!
#porencephaly #catswithspecialneeds #porencephalyawareness #awareness #lifewithdisabilites #blindcat #seizures #cat
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