Primary Progressive MS Treatment

Hello!  My name is Aisha Kenner.  I am the wife of a wonderful husband and mother of twin boys here in Fayetteville, Arkansas.  I am 43 years old and I am currently a Doctorate student, in Public Policy with a completion date in just a few weeks (YAY ME!!!!).  I am very proud of the path I have been able to walk for my family and I look forward to the many great things to come.  While I am thankful for everything that I have enjoyed in my life, there have been situations that were not so easy for my family and I to deal with.  In March of 2008, I was diagnosed with breast cancer.  This, understandably, frightened me but I knew that I would do anything in order to be there for my family, so with the advice, guidance and patience from my physicians, family and friends I decided to have a double mastectomy 2 years after our boys were born.  I did this so that I could try to have the best chance of upholding my role as wife and mother.  As challenging as the adjustment was, I was still thankful because my story could have turned out so different.  I walked the mile in the Race for the cure a few weeks after my surgery.  I never stopped working or being involved on school activities for the boys. As soon as my surgery was over and the doctors gave me a great prognosis I was ready to take off again.  As an Associate Dean for Student Affairs at The University of Arkansas, I had much to love about my position and the people I worked with and for but when my husband took a new position in Texas and shortly after Minnesota, I knew I needed to be with my family.  We had tried living in two states but it was very tough on our boys, and us so we made the decision for me to resign my position to have our family together again.  10-11 months after our 3rd move, his job would have him transfer to back to Arkansas so we had come full circle.  When we began the move to MN I began to notice strange things like muscle weakness, lethargy, clumsiness, just things that had never raised concern for me before.  I was healthy, an avid runner and kettle bell lover…. So I was concerned.  After many doctor appointments, MRIs, EMGs and a spinal tap, I was diagnosed with Primary Progressive Multiple Sclerosis.  The cancer scare I felt like I could handle, the relocation and temporary separation were easy, but this was something that completely caught me off guard.   A year later, I am still learning about my situation and I am so thankful to have my support system but this treatment will be costly.  Even though I am defending my dissertation in a few weeks, I’m more concerned about my appointment on the 12th of this month.  I am worried about the treatment, but I can appreciate the fact that I will have access to a medication that will slow the progression of this disease and give me the ability to keep going.  That’s all I want.  Ocrevus (ocrilizumab) may be the very medicine to give that back to me.  Prior to March 24, there was no treatment for this form of MS and only 15% of those diagnosed with MS have Primary Progressive.   I still feel very blessed to be here and alive and able to enjoy my life with my family, but I know I need this treatment.  I was reluctant to do this page because I didn’t want to put myself out there, but with me currently working part time and using my time to complete my degree and a series of medical bills piling up, I know my family and I would benefit from any financial assistance to help pay for this medicine which is priced at roughly $65,000/year as well as incidentals for me to receive the infusion (travel, follow-up appointments, etc.).  If you feel it in your heart to donate, we would thoroughly appreciate your gratitude, even if you can’t but you want to send a prayer our way, we would be forever grateful for your kindness.  Thank you for allowing me to share my story with you.