Two siblings, one rare disease.

If Tamana and Aryan could speak, they would tell you that they’re the best of friends.

Maybe it’s because they’re so close in age (Tamana is 9, Aryan is 8). Maybe it’s because they share so many of the same interests. Or maybe it’s because they have the same rare genetic medical condition.


Both children were diagnosed with Sjogren-Larsson syndrome, a condition characterized by dry, scaly skin; neurological issues; and eye problems. The disease also causes speech difficulties and 50% of people with Sjogren-Larsson syndrome require wheelchair assistance. 

Both Tamana and Aryan are part of the 50%. 

Despite their difficulties, these two are each other’s biggest advocate and their cherished interactions are something special to see. As the older of the two, Tamana will try to help feed her little brother when he has difficulty using a utensil, even though she has a hard time chewing and eating food herself. If it will help Aryan, she’s willing to do whatever she can to make that happen. 

They are so joyous and happy, rarely seen without a smile on their faces. They strengthen each other and approach each circumstance with a great attitude and positive outlook. 


Currently, both Tamana and Aryan receive in-home physical and occupational therapy. That might seem like a nuisance to most kids, but these two squeal with delight when they see their therapists. They’re truly extraordinary - two peas in a pod.

While they’ve made great strides with their therapies, it’s really disruptive to their school schedule. The therapy sessions are just 30 minutes long, but after loading and unloading each of their wheelchairs into the car, making sure they’re safely secured, and factoring in the drive time, it really adds up.

If they were able to work on their therapy from home, they would be able to get stronger and improve daily skills without taking too much time from school. For two siblings that want the best for each other, we’re just hoping to get the tools to make their lives easier, including a treadmill and bicycle. 


With them, you can bet they’ll continue to encourage one another, facing each challenge or task with a smile on their faces. 


Please consider helping make Tamana and Aryan’s life more comfortable and give them a chance to get the therapeutic healing they need. We can promise your generosity will have twice the impact. Thank you for reading our story!