It has been exactly one year since I last wrote a story on our blog. The gap is because it has been the most intense year of my life with no time for any “extracurricular activities” like writing, but this day is a very important one. On February 28th, the world recognizes Rare Disease Day, in honor of the 1 in 10 Americans living with a rare disease. Curren is among the rarest of the rare, he was the 4th out of 48 currently known patients who have been diagnosed with HIVEP2 disorder. This genetic disorder that impacts brain growth and development has manifested in Curren through many other ways: autism, epilepsy, ataxia, severe apraxia, growth hormone disorder, hypopituitarism, mitochondrial disfunction, and anxiety to name a few. It has not been an easy road, but it has brought many rewards and a unique perspective not able to be experienced by most. So what has a year of rare looked like for my family? Celebration, joy, resiliency, determination, fatigue, panic, fear, adaptation, frustration, gratefulness, humility. It is no different than any other family. The emotions are the same, just the experiences are a bit different. My older son says that while we may look different on the outside, we are all the same on the inside. We all have struggles, and while the circumstances may be unique, the desire is the same – to feel supported and loved and needed and important. That you can impact your world, make your mark, and that the world can be different because of you. For rare disease day, my ask is that you please think of those who seem to be different than you. Do we not all deserve an equal and inclusive right to a good life? At the core, are there even many differences at all? Do not be dismayed by the brokenness of the world.
1 Comment
Sheryl Heckman
2/1/2024 02:43:49 pm
My 44-year-old son was just diagnosed yesterday with HIVEP2 yesterday.
Reply
Leave a Reply. |
SignupSign up for our mailing list and you'll be the first to get updates on Curren and all his adventures!
About MeI am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life. Categories
All
Archives
October 2017
|