Tag: big sister

Welcome Baby Linden

March 28, 2015July 21, 2016 Amanda

This past week Elsie became a big sister to her little brother Linden. Linden came early and unexpectedly (born at 36 1/2 weeks) but he is doing well and we are all so in love with him. Above is a picture of Elsie meeting him for the first time. The way she is with… Continue reading Welcome Baby Linden

Tagged baby brother, big sisterLeave 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.

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

Instagram
Facebook
Pinterest
Twitter

A WordPress.com Website.

Subscribe Subscribed
- Elsinosis: Living with Cystinosis
- Already have a WordPress.com account? Log in now.