THEN: Saij was a healthy, energetic and enthusiastic little boy. He was loud and funny and always had an opinion and was never shy to voice it. He loved being outdoors and running after anything that moved. As a baby, he loved food and was quick to try new things and just as quick to decide if he liked it or not.
Saij was born on Long Island (Manhasset), NY and was a week old when we had his passport made and at 6 weeks moved to Sydney, Australia. We lived in a small town in the Northern Beaches of Sydney until he was nearly 4. From there, we relocated to London, England where we lived for 3 years in the heart of St. Johns Wood.
In July of 2008, yet another move, this time to New Delhi, India. Two months after our arrival – September 15, 2008 – a day I will never forget, our precious little boy was diagnosed with a rare and fatal, progressive, life limiting, incurable and horrible disease called Duchenne Muscular Dystrophy. It was unimaginable and absolutely heart-breaking to get this news. We didn’t believe it at first and met with leading pediatric neurologists around the country, only to be told the same thing over and over again, ‘he has all the clinical signs of Muscular Dystrophy but only a muscle biopsy would confirm that.’ We brought him to the States and discovered the diagnosis was completely accurate.
Looking back, the signs were there but any medical professional I showed him to, assured me that these ‘delayed milestones’ were within ‘normal’ parameters and that continued physical therapy would bring him up to par eventually. How could they be so wrong?
We spent the next 12 months in India exploring various alternative treatments, as we knew medical science had nothing to offer us. We left no stone unturned and tried many therapies, including, energy healing, spiritual teachings, homeopathy, ayurveda, pranic healing, yoga and herbal remedies. It was a path that showed no tangible benefit and the physical deterioration in Saij was now difficult to ignore.
We’ve come a long way since that day in September 2008.
NOW: On November 7, 2010, in an effort to raise money for Parent Project Muscular Dytrophy’s – Run For Our Son’s program, Vicky, Laura, Maggie and Mohina decided to run the NYC marathon. This experience led me to believe that anything is possible when a group of committed individuals work together towards a common goal. We are blessed in many ways and accept this journey as a way of reminding ourselves of what really matters in life. Saij often asks me, ‘Mom, would you love me more if I could walk’ and my response is, ‘no, if this is the way God gave you to me, then this is how I’ll take you. I love you just the way you are!’