A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, May 13, 2014

A New Angel

I really hate writing these posts.

It is with great sadness that tell everyone that Mariarosa Martino, an adult with Niemann Pick Type B died last week after complications from a recent surgery.  Her obituary and a place for condolences is here: http://www.mhfh.com/martino-mariarosa-assunta/

I remember meeting Maria at the NNPDF conferences.  She also purchased some jewelry during my fundraiser for Dan last year.

Mariarosa on the left, Rebecca on the right

Rebecca White, a fellow Niemann Pick mom, was creating a book of Niemann Pick families.  Mariarosa shared the following with Rebecca:

I was diagnosed with Niemann Pick Type B when I was 3 years. I am currently 28 and have been managing this condition my entire life. Niemann Pick has affected me physically, emotionally and spirituality. Physically, I have an enlarged liver and spleen, weakened immune system, chronic fatigue, & osteoporosis to name a few. This condition has made me question my self confidence and my life purpose. I have felt despair, pain but most of all hope. It is through acknowledging and accepting how this disease has affected me, I have been able to embrace my true self and purpose. I have learnt the importance of people, compassion, humility, love, strength in self-love, and strength in accepting this disease as a part of me and not defining me. I have learned to embrace my true self which includes expressing grateful to wake up each morning and embrace the beauty of the sun. It has taught me to be present today and not to be consumed by the past or future, to have the courage to accept the things I can not change, learning and realizing that a good life is not measure in time, money or materials but in being true to who I am. I dedicate myself in helping other by sharing my story, being open to all life experiences. I have learned that my body is just a vessel and that though I have this disease, it is my body that is sick and not my spirit. It is when I have been most ill I have learnt my true strength and the strength of humanity. It is this disease that though not upon anyones choice has brought a community of amazing spirits, souls and individuals that have left their imprints upon the world that very few every leave. I continue to strive for a cure for all of us affected and am dedicated to continue raising awareness. I owe my ability to persevere to those written within this book because it is their stories that continue to fuel my courage.


Post a Comment

I love hearing from my readers. Please leave a comment to let me know you stopped by. :-)