Written by her mother:

Hannah Sarah Sames is a beautiful little girl who was born on March 5, 2004. She has extremely curly blonde hair, a slight build, a precocious smile, and a charming personality that lights up the room.  She loves to sing and dance, and play outdoors.  Hannah is our sunshine, a beaming light of love and innocence.

When Hannah was 2 years, 5 months old, her “Grammy” Judy noticed her left arch seemed to be rolling inward.  I took Hannah to an Orthopedist, as well as a Podiatrist, and was told Hannah would be fine.  By the time Hannah’s 3rd birthday came around, I was suspicious something was wrong, as both arches were now involved, and her gait had become awkward.  Her pediatrician gave her a rigorous physical exam at her 3 yr. appt. and agreed she had an awkward gait, but felt that was just how Hannah walks. 

Two months later, I took Hannah to another Orthopedist.  I shared that my sister-in-law, Sarah, who is an Occupational Therapist, was just as obsessed with Hannah’s gait as I was.  The Orthopedist gave me a rude response and told me to just let her live her life, she would be fine. Convinced otherwise, Aunt Sarah showed cell phone video of Hannah walking to a PT she works with, and the PT felt Hannah has the gait like a child with Muscular Dystrophy.  I immediately called our Pediatrician who referred us to a Pediatric Neurologist, Dr. Timothy Foster.  Hannah also saw a Pediatric Geneticist, Dr. Darius Adams, and went through 6 months of testing for various diseases.  When all results came back normal, we went for our second visit with Dr. Foster.  He brought a huge text book into our exam room, turned to the ‘Neuropathy’ section and started skimming.  He turned a few pages and saw a picture of a skinny little boy with kinky hair and AFO braces that went just below the knee.  He had stumbled upon Giant Axonal Neuropathy.  He strongly suspected this was Hannah’s diagnosis, but referred us to Columbia Presbyterian Children’s Hosp. in NYC where the diagnosis was confirmed.
 
On March 24, 2008, we learned Hannah has Giant Axonal Neuropathy (GAN).  We knew this was a devastating disease, but didn’t really understand how grim a diagnosis this was until we met with our Geneticist and Genetic Counselor three days later. We learned GAN is a rare “orphaned genetic disorder” for which there is no cure, no treatment, no clinical trial and no ongoing research.  We learned the cord blood stem cells we had preserved from birth for Hannah, and our second child, Reagan, couldn’t even be used to save Hannah.  We’ve learned stem cell therapy breakthroughs are several years down the road and may not even be able to treat or cure GAN.  After 3 hours of counseling, I finally asked, “So you are telling us this is a death sentence?”  And, we were told, “Yes”.  This is the single most devastating moment of our lives. Matt and I each passed a mutated recessive gene on Hannah’s 16th chromosome.  Unbeknownst to us, we are both GAN carriers.  Carriers never get the disease, but can display mild symptoms, like low muscle tone, or mild neuropathy in the extremities as you age.  All healthy people have 4-5 mutated genes.  Disease surfaces when two carriers of the same mutated gene have a child, and each parent passes the recessive gene.  There is a 25% chance our children would be born with GAN, and a 2 in 3 chance our two older daughters are carriers.  

Matt and I walked around in a state of shock, anger, disbelief, grief, total devastation for two days.  Then, we realized, as with any disease, someone has to be the FIRST to be cured.  Some family has to be the first to raise funds and awareness and pull the medical community together to find treatment.  We decided this is why God gave this disorder to Hannah, because we will find a treatment and cure and help so many other people with GAN and other neurodegenerative disorders!  We will do for GAN what Jim and Jill Kelly and their families did for Krabbe Disease, through Hunter’s Hope Organization.  And thus, Hannah’s Hope Fund was born!