Mariya Ali

There is no foot so small that it cannot leave an imprint on this world.
Author unknown
I remember the day well. The sun was shining outside and I had planned to go and see my friend Zainab and her adorable son that afternoon. It was the first time I would be able to leisurely spend time with him sans others around. I hadn’t seen Zainab in a while either, so I was happily looking forward to whiling away the afternoon with them both.

As usual, we made tea and started chatting away, as old friends do. I watched as Zainab sat holding adorable little Adnan in her arms, wrapped up in a soft fluffy blanket. I stopped to take a sip of tea.

The conversation stopped while I sipped my tea and Zainab stroked Adnan’s head. For a few moments there was silence.

“Adnan has a life limiting disease. It is called I-cell disease. It’s really rare and there isn’t a cure.” Between her sobs I heard her say, “It breaks my heart to know that one day I won’t be able to hold him in my arms.”

I put down my tea and Zainab continued to stroke Adnan’s head. For a few moments there was silence.

I put my arm around her, at a loss of what to say. Part shock, part disbelief, part compassion, part confusion, I felt a plethora of emotions. Emotions for the beautiful child she was holding and emotions for the beautiful friend that I have.

My mother always told me that I would never understand what it’s like to be a mother until I am one myself. Witnessing my friends who are mothers has made me understand the wisdom in this. I realized that I was ill equipped to comfort Zainab at the time, after all, I have never experienced being the giver of motherly love myself.

When I got home I called my best friend, a mother of two. I told her what had happened and asked for her advice.
“What should I have said? What should I have done?”
“Oh I know about I-cell disease”, she said.
How did she know about I-cell disease? From what I had read and heard from Zainab, this was an extremely rare disease that few people were aware of.
“I’m friends with the Gandhis, the people who founded the Yash Gandhi foundation that raises awareness and funds for research. Isn’t that a coincidence?”

Yes, it is quite a coincidence; except I don’t believe in coincidences. Everything happens for a reason.

The advice I was given was to just be a good friend. I started to spend more time with Zainab, Ali and Adnan, send more messages, whisper more prayers. I facebook stalked Zainab, Ali and their family so that I could see more and more pictures of Adnan and updates on the cute things he does. With every second spent around him, every picture and every anecdote, I found myself falling more and more in love with this little Angel.

Rather than reading about I-cell now, I read about the amazing children past and present who have this illness. All babies are cute, but the beauty of seeing a baby with I-cell smile is breathtaking. Their huge chubby cheeks, insanely long eyelashes and gigantic smiles melt your heart. They radiate strength, endurance and courage.

Adnan has had a profound impact on me and on those around me. Every day I am inspired by Ali and Zainab’s strength. I watch their dedication and unconditional love towards Adnan in amazement.

“Adnan is here to teach us something”, said Zainab one day. She was referring to herself and Ali, but I do believe that he is here to teach others lessons too. You see, most of the time you see a child and momentarily think “oh, what a cute baby!” You linger on this thought for a moment or two and then the image vanishes into the abyss where all of the other images of cute babies you have seen reside.
But not Adnan.
His adorable face is a face that you will never forget.
His adorable face is a face that teaches you about endurance, hope, perfection, joy, love, happiness, sadness, elation, devastation and everything in between.
His adorable face is a face that teaches you about how precious love and time are.
His adorable face is a face that teaches you about life.
His adorable face is a face that you will never forget.

Adnan’s footprint may be tiny, but his imprint on his family, friends, acquaintances, strangers and the world is immense.

After all, everything happens for a reason.

I urge you all to learn more about I-cell disease and help find a cure to save these little angels.
You can donate at:
1. The Yash Gandhi Foundation (www.ygf4icell.org) – currently the only charity that funds research specifically for I-Cell Disease. The charity was set up by the parents of Yash Gandhi after he was diagnosed with the disease.
2. The MPS Society (www.mpssociety.org.uk) – the MPS Society have supported us from the beginning, and help raise awareness and money for I-Cell disease as well as other related diseases.
3. Shooting Star Chase Children’s Hospice (http://www.shootingstarchase.org.uk) and Noah’s Ark Children’s Hospice (http://www.noahsarkhospice.org.uk) – these and other children’s hospices do a fantastic job in providing care and support for children affected by life limiting and life threatening conditions and their families.