We are the lucky ones. My daughter was born with cystic fibrosis, but in the 1950s, parents of CF children formed the Cystic Fibrosis Foundation and since then millions of dollars have been poured into CF research. The average age of survival has risen from age 8 to age 37.5. While those numbers aren’t perfect, they are drastically improved, and new treatments and drugs are being in the process of being developed.
The parents of Hannah Sames didn’t have such good news when their daughter was diagnosed at age 4 with a genetic condition called giant axonal neuropathy (GAN). The condition, which is inherited just like CF is, affects the nerve cells. A person with GAN has trouble walking, loses sensation, coordination, strength and reflexes in her limbs, has hearing and vision problems, and will eventually become quadriplegic before the condition claims her life in her 20s or 30s. Another sign of the condition is kinky hair.
GAN is rare, so rare that the incidence of GAN is unknown. At the time of Hannah’s diagnosis, no research was being done to find a cure. After stumbling across GAN in a medical book, doctors told Hannah’s parents quite simply that this was a death sentence for their daughter. While they were devastated, instead of going home to wait for Hannah to die, her parents started Hannah’s Hope Fund and began working to raise money for better treatments and a cure. They know that there has to be someone who is the first to be cured, and they believe Hannah is that person.
The generosity and kindness of strangers is what foundations like the CFF and Hannah’s Hope Fund depend on. Family and friends can only do so much. You can help Hannah thrive and survive by participating in fundraising events or shopping the Hannah’s Hope Fund online store.