Children's Tumor Foundation的动态

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** Every parent sees their little girl as an angel. That is no different for our family. As new parents, we cherished every little giggle, smile, attempt at creating words.... she was/is our whole world. Gracie was born with a rather large birthmark on her torso. We just considered how we would have to deal with that as she got older. A “cosmetic” concern that she will be horrified with through her teen years. Jeanette and I agreed, we will just show her that it’s a mark of her superpower! Little did we know that those superpowers would be needed to fight NF. When more café au lait spots appeared, we thought, “you’re born with birthmarks, they don’t appear over time.” Right? Gracie was 4 months old. We were new parents and there were nearly a dozen birthmarks on her back that were not there a few days before. A google search and a few clicks later, the word neurofibromatosis entered our vocabulary Words like “genetic disorder”, “lisch nodules”, “nerve sheath”, became part of our lexicon and part of our drive to know all we could about this condition and what was being done to address it. Our pediatrician quickly made a referral to Children’s Hospital of Atlanta (CHOA) and their Neurofibromatosis clinic. We had to wait a painstaking 2 months before we could get an appointment and confirmation of diagnosis. But our journey had already started and it will never end. At 3 years old, our daughter is doing all the things she should as a “threenager”. She has hit her developmental milestones on time and amazes us every day. Aside from birthmarks, she’s telling NF who is boss. But we are well aware that any day new symptoms can present. All NF parents are riddled with these “what if” and “when” fears. While we didn’t choose the NF Community, we have found a tribe of advocates. A lifeline of sorts that strives every day for more information, more progress, and in the end, a true cure to a disorder that has for too long been ignored and under the radar. The advancements we have seen in medical technology over recent decades have put us on the precipice of a curative opportunity, but we need more. More awareness, more understanding, and in the end more action to ensure that all NF heroes have the opportunity to live their lives free of limitations! Ted McGee ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF