Help Me Live Free While I Still Can
Hello, my name is Rachel. I am a 23 year old living with a progressive neuromuscular disability called Friedreich's Ataxia.
Friedreich's Ataxia is a very rare, life-shortening, inherited debilitating disorder that causes progressive damage to the nervous system. It starts with minor symptoms of poor balance and coordination and can lead to scoliosis, heart disease, and diabetes. It will not affect my brain or cognitive function. I was diagnosed at a very young age but was walking until I was 18. I have since been living life in a wheelchair. It wouldn't be all that bad if it wasn't getting worse, but it already is. At birth, I was diagnosed with a ventricular septal defect and heart murmur. In 2010, I was hospitalized with heart complications. The back wall of my heart is continuously thickening. As a result of this, my heart is working much harder than it should. I also have a degree of scoliosis that is consistently worsening with time and is very painful. My speech and ability to swallow are consistently getting worse as well. My blood pressure and circulation are both very poor. With the continuous progression of my symptoms my prognosis is not great. I have always loved to travel and see new sights but Pittsboro, NC will always be my home. My husband and I have recently made a very tough decision that included selling most of our belongings including our 7 horses and many other well loved pets. There are some things that I would like to see and do while I am still capable of enjoying them. Sadly, I do not have very much time to make this happen. I would love to visit every state and maybe another country if possible. I strive to learn new things about everywhere I go. I enjoy meeting new people, sharing stories, and making memories. I am raising money to help us on our travels because we will be living on my very minimal supplemental security income. I'm sure we would get by with just that but it would severely limit our options. We are planning to camp out most nights but a bed and shower would be nice from time to time. Any donation at all to my journey would be appreciated very much. We will be updating our Facebook page every day. When we are travelling. I will post a link to this as soon as I have it. Thank you all so much! We will also update this page frequently! If you have any special requests for your donation feel free to let me know.
Suggestions for places to visit or things to do are extremely helpful
and welcome!
Here are a few things I would love to do: swim in a waterfall!
Bungee jump!
Hot air balloon ride!
Sleep on a beach!
I never went to prom so I would like to recreate one!
Visit the West coast!
Go kayaking!
I would love to visit my friend in Germany!
And so much more! But I am extremely grateful for anything I am able to do while I still can!
Please send any information or suggestions to [email redacted]
We would also be extremely grateful for food or hotel gift cards or just words of encouragement!
