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 .
Love your strength and courage ❤️ you and Jansher are the bravest people I know x
Thank you my dear friend ❤️
You are a powerhouse my darling – You, your family your children and especially J are truly inspirational
May you always remain happy and healthy
Our families became as one the moment we met. We love you so much. Thank you for this beautifully written piece.
Your words resonate in our hearts.
We love you so much Cecilia. Our Sophie was and still is a guiding light for Jansher . He will forever carry her in his heart ❤️
Our prayers are with you and Jansher. How you have managed this difficult situation is truly commendable – this must have given strength to your son. We humans have no say in when, where and how we will arrive in this world and when, where and how we will leave – in between we have to manage – how we manage is the test.
Thank you so much , you are right , managing is the true test. 🙏
You are an amazing mom! May Allah fill ur journey with peace and blessings.
Your tenacity, strength and the love of a Mother for their child didnt waver. Sadia, you’re a remarkable woman who perservered against all the odds ! Jansher my dear, wishing you an abundance of health and joyous moments forever with loved ones!
Proud of you Sadia! Best wishes for you and Jansher
Very well said, thank you for writing and sharing this! My heart is with you! My son, Ethan, a FibroFighter, is going to graduate school at Johns Hopkins and started his first lab recently, which is researching Fibrolamellar, so he is not only fighting, but searching for a cure as well! Looking forward to the Clinical Trial up there, starting in Nov. or Dec.
Thank you so much . I wish Ethan all the very best , and congratulations on his upcoming graduation. ❤️❤️ onwards and upwards x
Oh Sadia,
Thank you for your beautiful words and honoring Lacey by acknowleding our impact in your life, in Jansher’s life. There is a measure of redemption in knowing that in Lacey’s suffering, in our suffering that others are being healed and survive. Our hearts ache and are torn apart in Lacey’s absence. To be acknowledged in this way, to know that Lacey’s suffering, our suffering is not in vain. And that you carry Lacey’s sacrifice and that it is engraved in your heart, in the armour and sword in which you advocate and Jansher fights.
You too were a light for us when we were so far from home. The bond between Jansher and Lacey was great comfort for her, and the bond she carried and still carries with her will forever be held in my heart.
Your words here are so eloquent, soulful and poignant. What a lovefilled message of resilience, courage and sisterhood (regardless of how one identifies). Those of us in this fight truly share a labor of love.
Thank you so much Joy , you and Lacey touched our lives and hearts in the most profound way . Jansher and I will always carry Lacey in our heart , her strength bravery and resilience inspire Jansher every day . He struggles continuously with Lacey and Sophie’s Loss ….please know that we will forever treasure our time together ❤️❤️❤️❤️
It is thanks to Jansher posting his story on social media, that my son, Daniel, found out about Fibrofighters soon after his surgery. Sadia took the time to talk to me and guide me, and we then met with Tom and Dr Kent, who helped me in my battle to get The Triple Therapy here in the UK (through Dr Paul Ross at King’s Hospital). Daniel started treatment this week. Thank you Sadia.
Thank you so much . I hope Daniel is coping well with the therapy , Jansher is also on it for a year now . Always hear if you need me . ❤️❤️❤️
Such an incredibly moving account of your journey as a family and no doubt a testament of an ever greater elevation as strong, resolute and compassionate human beings. A brilliant example to say the least. My deepest and most heartfelt prayers are with you all, especially Jansher x
Thank you so much Sameera . Pls keep him in your prayers x x.