14th September 2019 at 9:39 am, 14th moharram our daughter came into this world. Our prayer for almost a decade became true, we were blessed with a girl child and we named her Anaya Aqil.
When Anaya was almost a month old, we took her to doctor as she was crying a lot, like any other child. But to our surprise doctor said that her breathing seems different and she might have a hole in her heart. On hearing this, I started trembling, shaking, crying and making dua to Allah swt to give her complete shifa. Same day we consulted cardiologist and he confirmed that she is having a hole in her heart. But the good thing was that it was harmless and it can heal on its own without surgery. It was a great sigh of relief for us.
Days passed by, Anaya was 5 months old but she couldn’t hold her neck and even couldn’t move on her side. This made me anxious and I visited her doctor and he said it is because she is having weak muscles and was given medication, was hoping that within few weeks she would gain her muscle power but this didn’t happen.
On 13th of march 2020, just few days before India went under complete lockdown due to corona virus situation, we took Anaya to cardiologist for a routine checkup. We were happy to hear that she was doing well. But just few moments later the doctor noticed that her tongue was shaking, she enquired about her neck holding, side movement, hands and legs movement and all I was saying to her was ‘no’ as she couldn’t do any of the asked activities.
The doctors started discussing, using medical terms which I was unaware of. I was feeling like there is something big they are talking about. My heart started palpitating, tears rolling down my eyes. We were asked to consult a pediatric neurologist. We immediately went there. Her blood sample was taken and the result would come after 15 days. Doctor said that she could possibly be affected with Spinal Muscular Atrophy (SMA), a disease which we never heard of. A life-threatening disease.
Those 15 days were the hardest for us. Day and night, we just prayed and made dua, gave sadqa and hoped for a negative report. Allah’s plan was to test us so the report came positive. Anaya was confirmed of SMA type 1 with life expectancy of just a year or year and a half with no cure. A disease in which child’s muscle power gets weaker day by day making it difficult to swallow food and then to breathe.
We were devastated with no clue of what we are going to do now. Me and my husband were pillar of strength for each other, entrusted on Allah’s will and were hoping for a miracle to happen.
We researched about SMA and found out that almost all the children suffering from this disease were kept on ventilator. We couldn’t imagine her going through all such pain. I prayed to Allah not to show me that day when she has to suffer with such pain, when she had to be put on a ventilator. Just the thought of her being put on ventilator made me insane.
Allah answered my prayers, she was not kept on ventilator as she could breathe by herself. But this breath lasted until around 6 pm, 4th shawwal ,28th may 2020.
By the will of Allah Anaya Binte Aqil left for Jannah and made a vacuum in our hearts and in our lives, until we meet her again inshaAllah.
It gives a smile on my face when I imagine her in Jannah, draped in finest of clothes, playing with Ibrahim (A S) Waiting for the time when WE reunite with her in Jannah as promised by Allah swt.
We had planned long ago of starting a charitable foundation but we were so busy in our lives that we kept on pushing this project. The time we found out about our daughter’s condition, we decided to start the foundation at the earliest on her name, that’s how the name came ANAYA FOUNDATION
By the Mother of Anaya Aqil.