It’s so rewarding– but so hard– being a guardian to pets with a rare disease. I know I get just a snippet of understanding of what it’s like to be a parent to a child with a similar condition. The work to keep them stable; the emotional struggle of knowing this is a deadly condition (at least for pets); the feelings of being tired and drained and just wanting to take a mental vacation but knowing that’s not really an option; the slow progressive mourning; and the fleeting but exuberant joy you get on the “good days” when your furbabies are doing kind of okay.
My two boys, Teddy and Jamie, are rescues from a cat colony I worked with last autumn, which our family ended up adopting. Little did I know at the time, they had a rare Lysosomal Storage Disease (LSD) and would change my daily life considerably.
Teddy, pictured above, had an eye injury when we rescued him. At the time, we thought that was the worst of his troubles, aside from some mild discoordination, which we just assumed was a mild form of cerebellar hypoplasia as a result of an earlier infection. His brother, Jamie, whom I rescued, fostered, and adopted later, was small, a little clumsy, but otherwise seemed normal. Aside from Teddy’s multiple eye surgeries, ultimately leading to eye removal, things were going smoothly.
Then back in February, Jamie suddenly began to lose mobility. I immediately brought him in to our family vet, who did a physical and a brief neurological assessment, and immediately referred us to a neurology specialist. To make a long story short, although we don’t know exactly which LSD the boys have (there’s many and unfortunately very few that can be identified in cats due to a lack of genetic markers), they are showing many of the classic signs of an LSD (vacuolated lymphocytes, dwarfism, mobility issues, and, now, liver problems).
The boys both have proportional dwarfism and even though they’re over 1 year in age, each weighs only about 4 lbs. and is the size of a 5-month old kitten. Jamie also has what’s known as the classic “Hurler-like face” (in kitty version) that is seen in a group of LSDs such as Mucopolysaccharidosis and Alpha-Mannosidosis, but they have neither of these conditions. In cats, the muzzle is short, the face looks more broad, and the eyes more widely spaced.
The boys are, as we officially call them, “floor cats” because of their coordination problems. So, whenever I spend time with them, I have to sit on the floor. Teddy also requires more help with feeding, sometimes to the point of being hand fed. Thankfully, they both have enough mobility to reliably use the litterbox.
Unfortunately, although they’re not in liver failure, they are having a lot of problems with their livers, which is affecting their feeding habits and also necessitates a more liver-friendly diet. But probably within the next half year or so, it will get bad enough it will be time to put them to sleep.
It is amazing the strength one finds to love and care for pets with rare diseases. It’s not something I would have purposefully chosen, because it takes so much time, effort, and mental and emotional energy. And it is soooooo hard to think about the thought of losing my boys so soon. It’s been less than a year but they’ve wormed their ways deep into my heart and I am so grateful I’ve had the opportunity to be their furparent and give them the best life possible.
I’m still left with the inevitable guilt of not being able to save them and give them long healthy lives (irrational, I know, but the guilt is still there). And I feel guilty looking forward to someday not having this great responsibility nor feeling so mentally and emotionally worn out (a feeling perhaps many people in similar situations can empathize with). But I also love them fiercely (as I do all my fur family) and I try to give them as many good days as possible before their time draws to a close.
I still hope they have good days left and I have plenty of time to love on them. But whatever happens, I’ll never regret adopting them. I just regret that they were born with this horrible condition that’s cutting their lives so terribly short.
As a genetics researcher, I know recessive conditions like these can be one of life’s cruel little jokes. But it’s the darker side of all the marvelous things evolution has done and, as with all areas of life, we must take the chaff with the wheat.