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Elsinosis: Living with Cystinosis

Elsinosis: Living with Cystinosis

A real life account of beautiful Elsie and how she lives with cystinosis

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Tag: cystinosis research

Early Years, Fun Stuff

Holiday Giving

November 29, 2015July 18, 2016 Amanda

Before having children the holidays were never really that big of a deal to me. It was always nice to have those few days that our family got together to celebrate and I loved trying to find that perfect gift for them but holiday cheer and activities were never high on my priority list. However… Continue reading Holiday Giving

Tagged cystinosis research, emily ley, holidays, today is miracleLeave a comment
Early Years, Fun Stuff

Happy Holidays!

December 19, 2013July 26, 2016 Amanda

This is the Christmas e-card I sent out to all of our friends and relatives and I just had to share it on here because her face is priceless! Usually she loves everyone that gives her attention and can charm the pants off of almost anyone but for some reason she is not a fan… Continue reading Happy Holidays!

Tagged charity, cystinosis research, happy holidaysLeave a comment

Intro

Hi my name is Amanda and my daughter, Elsie, has cystinosis - a rare, genetic, metabolic disease. Right away I found all the facts about cystinosis and its treatment overwhelming. What I really wanted to know was if my little girl was going to be okay. Could she still have a happy, normal life? The answer is absolutely!

I've created this blog so that other families affected by cystinosis can follow our journey through this disease, learn what life is going to be like and how one happy, amazing little girl makes it through.

Above all else just know that there is hope, you're not alone and your life can still be filled with love and laughter.

Instagram

Loving this girl on Rare Disease Day and every other day too!!
Old eye drops: made by our local hospital pharmacy and cost about $100 for a months supply
It’s Rare Disease Day today! Loving this little girl today and always 💖
I don’t post enough silly pictures on this account so here’s Elsie laying an egg at the pumpkin patch 🐣
Someone begged for an art account and we all know I’m helpless against her puppy eyes. Check out @elsiearts_ for fun creations by Elsie 🎨
I say this every year but who are these big kids? What happened to my babies 😭
Happy Birthday to this big girl! 9 already 😮❤️
So a few months ago Elsie told me that she was starting to feel different from her friends. She wanted to know why she was the only one who had to take medicine everyday. Why she was the only one who had to have regular blood draws and doctors visits. It’s hard when you’re only 1 of an estimated 2,000 people worldwide living with cystinosis and though she can’t make friends that live in her city with the same disease, she can make friends with other children living with medical conditions. In came @zajacranch an organization that helps sends kids with disabilities and medical conditions to camp! You might not know this, but a lot of summer camps can’t take children with special needs, for instance, someone like Elsie who requires medications on a rigid schedule including in the middle of the night, so the fact that Zajac Ranch exists is incredible. And this year we really lucked out because Dave, Linden and I also got to go with her!

Donate

Because cystinosis affects only an estimated 2,000 people worldwide there is no government funding for research towards better treatments and hopefully one day a cure.

The Cystinosis Research Foundation commits 100% of your donation to issues grants for bench and clinical research studies in order to accelerate research progress and ensure that cystinosis research is on-going.

Click on the logo to donate today

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