Fighting Cystinosis with Sweet Emma
Donation protected
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 2000 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 unplaned hospital stays and her future kidney trasnplant. Funds will help pay bills, 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. If you are able, please help Emma's family by donating to her medical care fund.
https://www.facebook.com/emmasesentialsforlife?fref=ts
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 unplaned hospital stays and her future kidney trasnplant. Funds will help pay bills, 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. If you are able, please help Emma's family by donating to her medical care fund.
https://www.facebook.com/emmasesentialsforlife?fref=ts
Organizer and beneficiary
Sarah Flores
Organizer
Yreka, CA
Shelly Suetta
Beneficiary
