Hey there, my name is Peter Ulrich. I am married to a beautiful woman, Xinia, who gave birth to our first little baby girl just a month ago, Katelyn Joy. Isn't she beautiful!?
When I was conceived, which I'm not sure exactly on what date that was but I do know I was born on March 13, 1990 so approximately 9 months before that, at conception, God chose to make things work a little differently in my body than the rest of my siblings.
There was a mutation in my NF2 gene which caused it to not produce what is called, protein Merlin. This protein plays an important role in regulating the growth of nerve tissue. When Merlin is being lazy and not up and working, the growth of cells is not regulated and tumors grow. And Merlin's job is to regulate the growth on NERVE tissue and so if he's inactive, that means nerve tumors.
This is called NeuroFibromatosis Type 2 (NF2) NF2 is a genetical disorder and is often inherited from parents. In my situation it was a random mutation because neither of my parents had NF2. It cannot skip a generation.
We discovered this in 2008 right before I turned 18 and I was legally blind in one eye and the other eye could not turn out past center and I was deaf in my left ear at the time.
Now I have vocal paralysis, facial paralysis, nearing deafness in my one good ear, Severe dry eye that is suspicioned to be caused by an optic nerve tumor behind the eye, balance loss, headaches and the list goes on. I've had multiple surgeries and radiation treatments but there is no cure. Surgery and radiation attack one tumor at a time but it's an endless cycle because they keep popping up due to protein Merlin being lazy.
To date, the only other alternative was a trial called, Avastin which costs 20-40 thousand per month and would only affect my two hearing nerve tumors.
Just a few months ago a new Clinical Trial was launched which addresses all NF2 tumors. This is the most promising trial ever invented for NF2 because it addresses everything that is needed to halt the growth and shrink tumors for NF2. Avastin did not address every aspect. So shrinkage with Avastin was not very common.
FORTUNATELY, we were able to get on the trial during the first stages after it got a start successfully tested on a few patients.
This is extremely exciting for us because any of our kids have a high chance of inheriting NF2 from me. And it's not pretty. So if we find a cure, that will be the end of that! We are also excited because we get to be part of a study that will likely change the prognosis of NF2.
So the trial is FREE!!! BUT! We have to travel to Boston, MA every four weeks for testing and to pick up the medication. It is a chemo type medication for NF2.
Every four weeks we will fly up and be there overnight at the longest to pick up the medication. Every third time, or once a quarter, we have to fly up and stay 2-3 days for MRI scans and blood work.
The only thing our insurance won't cover at this point is the travel, car rental and hotel.
To be honest we don't know exactly how much we need. Ticket prices will vary as well as everything else. We also don't know how many times we will need to go. As of right now it is indefinite. If effective, it could be several years. So what we did is we put a rough figure out to cover the majority of our travel expenses for six months. We may need to adjust it but it should be a minimal change, if any.
We are flying up to Boston this coming Thursday, September 14-16 to do the first scans and pick up the first round of medication. We will likely have a lot more information on projected cost of travel by then.
You can follow our story as we start this journey on our Facebook page @ Peter's NF2 Trial Journey
You are helping more than just us. You are changing the world for everyone that has NF2!
We are blessed and humbled by your gifts and forever grateful for your help in finding a CURE for NF2!
- Carol Crabtree
- Justin Penner
- Charlotte Reber
- Joanne Weaver