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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: adoption

Early Years

One in Four

April 21, 2014July 26, 2016 Amanda

I am not a gambler. Dave and I have a one in four chance that our children will have cystinosis and this fact has been weighing on me ever since Elsie's diagnosis. We've always planned on having two children but we've really been struggling with the idea of bringing another child into the world knowing… Continue reading One in Four

Tagged adoption, cystinosis, in vitro fertilization, IVF2 Comments

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.

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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