A rare disease in the USA is defined by effecting fewer than 200,000 Americans at any time
“A rare disease means that there are less than 200,000 people out of the 320 million people in America have it”
The Undiagnosed Disease Network (UDN) out of the National Institution of Health treats the rarest of the rare, where less than 50 people are affected.
As my health continued to be a tragic story playing out with constant new climaxes, it left people desperate to find answers. A group of people that are my advocates never let up this chase. The chase to explain what is going on. The chase to save what’s left of my body. The chase to ensure more time. The chase to end the genetic chain that is terrorizing my strong organs. The chase to let me be me. The chase to help others. These people are my family. They dedicate their lives to nurture others and establish this chase for health and joy. They fight relentlessly for my dreams… To watch my sisters blossom in this world. To pursue a long education so I can be capable of my goals. To be a doctor, or something that helps others. To be a mother one day. To see the glory in each day
I am very grateful to say that within the upcoming months I will be fortunate enough to travel to the Boston Children’s Hospital. I will be examined by a team of specialists lead by a geneticist. Why am I traveling so far? Well, I am now accepted into the UDN with the NIH to further pursue my health issues. Instead of the eight month wait to be told if they even want your records, I am already told I am in. There will be lots of tests and discussions performed during this process. I feel so blessed to be accepted into the program.
My family and I believe in the power of prayer. It is a miraculous thing. We have witnessed it so many times… I believe that a reason why I was accepted and in such a fast manner was because of all of the prayers and good vibes. God is so good and positive thoughts are wonderful. The power of these prayers allowed my family and I to have such a big success and new hope for more information.
The timing of this is all perfect since this week on the 28th of February, we will celebrate Rare Disease Day. America began to acknowledge this day nationally in 2009. President Obama sent a letter proclaiming this day in 2013. This day is to shine light on those battling, the loved ones of the individual affected, the angels with radiant wings in heaven, and the knowledge to come for Rare Diseases…
Knowledge, hope, and new adventures here I come. I am defying the odds. Because I am blessed to be surrounded by love.
I will forever be humbled to be chosen for this opportunity. Prayers are being sent to all the other fighters searching for answers. I am thankful to be rare yet known. Known by the NIH UDN.
Love to All,
You are an inspiration. I pray for you by your name every day. May you find answers and cures. Amy
Praying for you and Gods Blessings on your Family,
Be not discouraged nor dismayed for The Lord your God is with you wherever you go
Keep fighting! We continue to pray for you daily and are encouraged and hopeful by this new opportunity for you! Keep staying strong!
I think what we’re seeking is an experience of being alive, so that our life experiences on the purely physical plane will have resonance within our own innermost being and reality, so that we actually feel the rapture of being alive.