Saturday, August 15, 2015

Let's Support Emma

If you've been a follower of Annie and her team for awhile now, you'll know that we have a special place in our hearts for Shelley and her girls, Lilly and Emma. Shelley's mother and the girls' grandmother is Kathleen of Starr Design Fabrics, who we blogged about here

We love staying with Kathleen when we do Market and Festival in Houston as well as Sew Expo in Puyallup. And we especially look forward to Road to California, because that means we'll get to see Shelly and the girls, too. We always arrange to have dinner with them at least once during the week we are at that trade show. 

The girls have quickly become a crowd favorite as they walk around the show in their darling outfits, and it's always a treat to have them come by and help us in our booth.

Imagine our surprise when we found out that sweet little Emma is very sick.

Here is their story, taken from their Go Fund Me account:

On June 17th, 22 month old Emma of Scott Valley, CA was diagnosed with a rare and incurable condition, Cystinosis. Cystinosis is a metabolic disease that affects 500 children and young adults in the U.S. and only 2,000 worldwide. The disease causes cystine crystals to build up and attack all of the body’s organs, as well as muscles, white blood cells, eyes and the central nervous system.

After nearly a month at UCSF Children's Hospital, Emma was allowed to return home. While the family is thrilled to be home, the challenges of caring for Emma's serious condition are complicated. Emma is required to follow a strict and rigorous medication schedule (requiring dosages of at least 13 different medications, administered about every 30 minutes) from 6:30am to 12:00am, 7 days a week. 

In addition to the medications, Emma and her family will have to make frequent trips to and from her doctors in the San Francisco Bay Area, roughly a 265 mile trip each way. Because cystinosis is so rare, the family will have to attend appointments with specialists, cystinosis clinics, and educational events. Emma will require a kidney transplant sometime in the coming years. Any money donated will be put in savings for unplanned hospital stays and her future kidney transplant. Funds will help pay bills and cover lodging and food due to loss of work.  

Emma's family has handled the recent diagnosis of their sweet baby with grace and amazing strength. They need financial support to help them to continue to care for Emma at home while providing her with the best medical care available. 

Here is a video that tells about the disease. 

We knew that we needed to do something special for the girls and for Shelley, so Annie and Kait of Knot and Thread got together to make each of the girls a Fetch Your Sketch. For Shelley they made a beautiful Picnic in the Park to hold medical supplies.

These girls are all things girl, so lots of pinks and purples were included in the fabric choices. We added some Frozen gear (they love that), coloring books, crayons, colored pencils, and stickers to carry in their Fetch Your Sketch. Shelley will have plenty of pocket space in her Picnic in the Park, so it should be helpful for holding all of the medications needed for sweet Emma.

If you are able, please help Emma and her family by donating to her medical care fund. Together we can make a difference and even $5 can add up to a huge help. Let's unite as a ByAnnie community to show Emma, Shelly, and the family that we are with them and support them.

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