Receiving the devastating news that your child has cancer is something that no one can truly prepare for. It’s a heavy blow that knocks the wind out of you, and just as you begin to process the weight of that statement, you’re hit with the harsh reality that it’s an incredibly rare form of cancer, with no known cure. 

When Jansher was diagnosed, I couldn’t help but feel an overwhelming sense of disbelief. After going through my father’s cancer journey, which took him at only 47,  and my sister’s battle with cancer as she turned 40, I thought our family had endured enough. Cancer had already taken its toll on us, or so I thought. 

The disbelief that my son Jansher 19 has cancer, quickly turned into intense grief, loneliness, and extreme fear. To all the mothers who have been in my shoes, you understand the ache that consumes your heart.

Amidst the darkness, a glimmer of hope appeared when I met Joy, Lacey’s mom, another mother of an incredible young girl with Fibro, at New York Presbyterian where Jansher was admitted at the same time . Joy’s unwavering positivity and guidance showed me that we are not alone in this battle. There is a whole community of mothers who share the same pain and anguish. Even though Joy and Lacey were going through an extremely challenging time, she reassured me that there are doctors like Dr. Paul Kent who are paving the way for progress. Inspired by Joy and her incredible strength and grace under pressure, I gathered myself and realized the importance of advocating for our children. 

 Our kids are often too sick and vulnerable to speak or fight for themselves. So, for the past 20 months, I have dedicated myself to advocating, fighting, researching, networking, and finding ways to ensure Jansher receives the best possible care. However, the biggest challenge has been trying to maintain a sense of normalcy and happiness for my children amidst this disease. I yearn for them to experience joy, and it breaks my heart to see him suffer. The loss of other Fibro children, some of whom I knew personally, has been a devastating setback. Every fiber of my being aches for these mothers. I often wonder if we will ever find peace, if we will ever know that our children will be okay? Living in fear has become our new normal, but as human beings, we learn to adapt and make the best of challenging situations. 

Through this experience, I have learned to be immensely grateful for the incredible people I have met along the way. I am grateful when Jansher overcomes the toughest challenges, when he has moments of respite, and most importantly, that he is still here with us, doing things he loves.

 Despite my best efforts to let go of fear, it clings to my heart with its sharp claws. The uncertainty of the future terrifies me. All I can do is search for ways to heal my son. I have explored Chinese medicine, herbal remedies, energy healing, psychotherapy, and conventional treatments. I have left no stone unturned in my pursuit of a new lease on life for Jansher. I try, with every ounce of my being, to be the most productive mother I can be. I have come to accept that we were chosen for this journey, and perhaps there is a reason behind it, even if it’s not yet clear. I will continue to search, to reach out, and to explore alternative healing methods alongside conventional treatments. 

 If there’s one thing I would share with every mother facing a similar battle, it is this: advocate for your child, question the medical teams, research, and trust your instincts. It is through our unwavering determination and love that we can make a difference in our children’s lives. I find solace in knowing that I am not alone in this journey of motherhood. My heart aches in harmony with all the mothers going through what I am going through and more.

I find strength in our collective love and empathy. Together, we can navigate the highs and lows of motherhood, supporting one another with open hearts and unwavering compassion.

With love and gratitude,

Sadia Siddiqui

Sadia Siddiqui is a British Asian mum of two living in New York . She is a Creative Director and diversity champion in the field of Fashion and Art .