Help Roxy battle ALS Amyotrophic Lateral Sclerosis

Hello dear reader,

I am at a place in my life right now where I have to let go of the shame and set aside my pride, and ask for your help.

My name is Roxy and I have been diagnosed this year, right before Christmas, with possible genetic Amyotrophic Lateral Sclerosis (ALS, Lou Gherigs disease) at the age of 36.

This cruel disease is creating chaos and affects a very specific group of neurons called motorneurons, by killing them off. A treatment that could stop the progression of ALS or cure the disease does not exist yet. The disease is always fatal.

I was always healthy, hard working and living my best life when suddely, I realised I was losing balance. Started noticing atrophy and weakness in my left leg and trunk muscles.

Later on, atrophy extended in my right leg as well.

In September this year, my father passed away of an unknown neuromuscular disease. His suffering was unspeakable. He fought bravely for 2 and half years.

We suddenly made a connection and ordered genetic tests for me.

My first genetic tests came out inconclusive. A second test is being performed right as we speak.

After paying most of the blood work, MRIs and doctor visits myself, I am financially drained out.

I am still able to work, which is great. I walk way slower but grateful for every step.

I am young and early in the progression level, this is why I want to try slowing this disease down or maybe even stop the decline, if possible. This fund is intended to help me try Stem Cell Therapy and Infusion Therapy and travel abroad, if needed, to participate in trials.

Vitamin Infusions seem to help as well. The therapies seem more successuful when started early. Time is of most importance in neurodegenerative diseases.

If I manage to slow this beast down, I might have a chance to live a bit longer, and maybe even grow old someday.

No one should have to feel this way, that there is no hope.

I am ready to fight the hardest battle.

I thank you from the bottom of my heart.

Roxy