Emma Daniels was a beautiful baby with long lashes, dark hair and porcelain skin. She was born in 2009 and her grandmother, Cheryl Daniels, calls her a little angel. Emma met all over her milestones for the first two months of her life and then suddenly she started to deteriorate.
Emma started crying all the time and for almost three months her family had no idea what was wrong with her. Then when she was five months old, the family received devastating news: Emma had Krabbe Disease and it was fatal. Cheryl Daniels said that because she was not diagnosed at birth, there was nothing doctors could do to help her.
Krabbe Disease is a rare genetic disorder that only occurs in 1 out of 100,000 live births. The disease destroys the protective nerve coverings in the brain and throughout the nervous system. While there is no cure for it, if diagnosed before symptoms set in, stem cell transplants and cord blood transplants have had some success.
Dr. Amy Waldman, a neurologist at Children’s Hospital of Philadelphia, says early screening is essential for treating these types of diseases:
Time is of the essence with these diseases. Unfortunately, if you wait until a child starts to develop symptoms, it is almost impossible to get enough enzymes or cells to correct the problem so this is a huge advancement. I think for the future for these diseases is, how do we do a better, safer more effective transplant, and there are different things we are working on in terms of developing those strategies.
Emma died when she was just two and a half years old and while her family tried to make her comfortable, Cheryl said her beautiful granddaughter was in an excruciating amount of pain:
It’s extraordinarily painful. Imagine every nerve ending firing and being exposed. That’s what it is like for these children. I can’t tell you the horror this disease does to the children, just horror.
As a result of her granddaughter’s death, Cheryl started working on Emma’s Law. The law would have Krabbe and five other similar disorders added to the list of newborn screenings. New Jersey and six other states have already adopted laws like Emma’s law, but Cheryl says she will not rest until it is nationwide.
Emma is the real hero in my eyes, I’m just the vehicle. So to respect and honor her life I don’t think there is an option but to use the info and knowledge to save another child and family from going through this monster of a disease.
To learn more about the disease and find out how you can help go here.
Featured image via Fox 13