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This world is not a place where people can be together forever. Therefore no relationship can be taken for granted. I realized this when my first born, my darling daughter Rumaisa was diagnosed with cerebral palsy in 2003. My journey of special needs took me along a path of medical emergencies, palliative care, physio, occupational or speech therapies and dealing with a child in Coma. Rumaisa went into Coma on 10 January 2005 and I was informed by her doctors that she was unlikely to come out of it. This was a hard realization.

I was blessed with another princess Zara in 2009. She too developed similar symptoms and started digressing by her first year. A clear diagnosis of Meta Chromatic Leukodystrophy MLD was only available after Rumaisa’s demise in 2010. An event that shocked me to the core. However, this diagnosis carried with it the weight of the horrid fact that Zara too is with me for a limited time. The hardest part was the knowledge that the event of her joining her elder sister is a certainty, can occur anytime and I her mother could do nothing about it. I was in for a colossal task which entailed looking after my daughters,  supporting and consoling my husband, managing an efficient household and above all finding an anchor to shore up my depleting reserves of hope and energy.

I thought hard about my predicament and out of despair sprung the first ideas for #MLDAwarenessPakistan a proactive support group responding to those in need. I am proud to announce that we are the pioneers in Pakistan to document about this disease so that the early detection of the symptoms leads to effective therapy/management options. My initial forays were small projects of support, awareness and counseling/motivational talks. I made and uploaded videos on the preparation of tube feed and management of tube fed children. I visited old peoples homes and special needs centers, formed a support group for special needs mothers and counseled/motivated patients at a psychiatric care facility.

The choices I had were stark. I had no option but to be brave for myself and more so for my family. My daughters needed me in more ways than I was capable of. I was distraught, near despair and always on the brink of collapsing under it all. Zara’s ascent to heaven added on to my grief. Even the sweet antics of Rafay my youngest child barely evoked a smile from my side. Somehow despite this turmoil and the immense emotional upheavals, I went through, I never lost sight of my small attempts to be of service to others.

I started calling them kindness projects as my attempts to be the change I wanted so badly in the society at large took me along a journey of self-discovery. I found instinctive avenues to contribute towards causes with which I could associate. I discovered that positivity of intent can create profound results. I initiated a toy collection drive for children living in orphanages and care packages for the pediatric cancer patient. Both were made possible due to the kind contributions of my friends and others who made the projects a success.

#MLDAwarenessPakistan  is a result of the turmoil and anguish in my life and a desire to make it easier for those undergoing similar struggles. It’s an outreach program aiming to revive our cultural strength. An attempt to promote communal responsibility. Providing an avenue for all to explore their own selves by sharing burdens and providing relief to those in need. It’s not how much that matters. Even a listening ear, a shoulder to lean on or a supportive pat on the back can work wonders. All those who wish to support my cause or in need of support, please write to me at sadafaisalmzr@yahoo.com.

Abdur Rafay my son whose mission is to carry on the legacy of his beloved sisters; Masha Allah, he conducted a successful interactive workshop.

Awareness about the diagnosis, early intervention, rehabilitation and management issues along with our responsibility as a community would play a pivotal role in highlighting about a rare disease which has previously never been addressed in Pakistan. An insight into the lives of patients and caregivers facing a rare disease would educate the general population and professionals for better treatment options and care. We need to broaden our thinking and expand our vision to serve humanity. Empathy, as opposed to sympathy, would bring a positive change in the lives of patients and their families. Be a part of Rafay’s campaign on shining light on leukodystrophy.

If a 5-year-old can do it why can’t you? Wake up your conscience and step forward to make our country a brighter and a living place for all.