A few weeks ago I was browsing Instagram and stumbled across the TinySuperheroes feed and immediately got that excited feeling I get when I see every day people doing beautiful things for warrior children. There was picture after picture of cute and adorable kids all in superhero capes and their enormous smiles said it all. As did the description, “TinySuperheroes seeks to empower Extraordinary kids who exemplify strength & determination as they overcome illness or disability.” I went to the website to find out more and within 10 minutes had sent in my application for Elsie to join the squad and receive her own cape.
TinySuperheroes was started by Robyn, a mother to two children, neither of whom have a disability or illness I believe. What started out as a birthday gift for her nephew, turned into a gift for a special little girl named Brenna who has Harlequin Ichthyosis, and TinySuperheroes was born. The way it works is for every cape sold, $5 will go towards a cape for a child that has been nominated to receive one. $30 will cover the cost of 1 cape so there’s also the option to donate money so that children on the wait list can receive one sooner. Here is a great video about what Tiny SuperHeroes is all about.
Usually they have quite the long wait list so I was surprised when not two weeks later I received an email to say that something super was coming our way. The rest of the story is probably best described in pictures
As you can see Elsie absolutely loves her cape and declared within the first 10 minutes that she wanted to wear it forever! She wore it to the park and while riding her bike and loved whenever someone would ask her about her cape. She’s also quite protective of it and doesn’t like her brother touching it so once he gets a little older I’m gonna have to buy him his own, and perhaps make an extra donation. If you’re not interested in a cape but would like to help a child on the wait list get their cape a little faster you can donate on their website here.
Thank you so much to Robyn at TinySuperheroes for recognizing just how courageous children facing illness and disability are and giving them the physical proof that they can show the world. You are making a big difference in these children and their family’s lives.
It’s been quite a while since I gave an update on Super Elsie but that’s because she’s been doing really good lately! At our visit to the renal clinic in April everything looked great. Her protein/creatinine ratio came back down to 316 g/mmol after starting Enalapril in January and she gained 1.15kg in three months, which we were so happy about. Unfortunately the next day she got really sick and we had to take her the ER to treat her for dehydration because she wasn’t able to take anything in or keep anything down. Since then she’s refused to drink any water with DuoCal in it so I don’t think her weight gain will be as great when we see them again in July.
However, slowly but surely I’ve noticed her eating seems to be getting better. She still only eats a small variety of food and tends to eat the same 3 foods for days but the volume she takes in is quietly getting larger. Not always, but every now and then she’ll eat everything on her plate and ask for more. She’s recently become a pasta fiend and usually eats a ton so that always makes me smile. I would say 75% of the time she still eats like a little bird, slowly picking at tiny amount on her plate, but that 15% of eating well is giving me so much hope for the future!
Elsinosis: Living with Cystinosis 