If you were to meet Rebecca, you would think she is an ordinary mom, but she is nothing short of extraordinary. Now she would shy away from that compliment and tell you that her son is extraordinary and he is. Johnathan was diagnosed with NPC (Niemann-Pick Type C) which is a rare and deadly neurodegenerative disease often nicknamed childhood Alzheimer’s because of the similarities in the brains of people who suffer from those conditions. 1 in 150,000 children are diagnosed with NPC.
Rebecca fights for her son every day. She fights to give him a “normal” life; a life where his disease is not the center of their universe. And while the community has cheered behind her helping to raise awareness for NPC by making Jonathan the grand marshal at last year’s Christmas Parade and Make a Wish helping to grant Johnathan’s wishes; those bright spots are still flagged by trips across the country to Maryland for treatment and difficult days where she has to witness the symptoms of NPC in her child. She also fights to bring awareness to this disease and a cure.
Rebecca’s children come first. Despite being a mother who works outside the home, she is a constant figure at the school. Whether it is at drop off or pick up or volunteering for a school function she is ever present.
Rebecca, you are a warrior and a light. Thank you for inspiring all of us with your strength and grace.
Sincerely,
The Holiday Cheer Elves
P.S. I loved your Facebook post about the Holiday Cheer and I hope you are okay with me sharing it here as well.
