Some families have been dealing with the impact of a deadly disease on their lives for many years. I met one such family a number of years ago - they're my brother's neighbours in Atlanta, Georgia.
Jake Burke is father to Jack, and Jack has NF.
Neurofibromatosis (NF) is a set of complex genetic disorders that affects almost every organ system, causing tumors to grow on nerves in the brain and throughout the body. Around 1 in 3,000 babies are born with it. There is still no known cure.
Please support the work that Jake, Jack and their whole family do in raising funds to Cure NF: http://www.curenfwithjack.com/
Six years ago, my brother produced a video about Jack - it still puts a lump in my throat: https://vimeo.com/curenfwithjack/curenfwithjack
So many families know what it is like to orient one's lives around a child or family member who has a disease or disorder that requires you to think twice about what you can and can't do, where you can and can't go, who you can and can't meet, and what you can and can't dare to dream for the future. Our own family lives with autism, and it affects everything we do every day of our lives.
You kind of get used to it, although you never do. You choose to live the best life you possibly can, enjoying all the joys and triumphs, while just every now and again being overwhelmed by thoughts of what might have been. You live with the constant desire to hope and believe and wish for a cure. You'd willingly trade your life for your child's. You stand in awe of your child and how courageous and gracious he or she is in the face of all that life has dealt them.
You never stop loving. The trick is to never stop living. And above all, you thank God for those who stand by you, and walk with you on the journey.