THE STORY BEHIND THE NAME ABDULLAH AID
The story of our dearest son Abdullah: a beautiful and blessed baby, always happy and smiling. Sadly, had a genetic disease called SMA Type 1. Many people do not know about SMA, SMA is short for Spinal Muscular Atrophy; a genetic disease that affects motor neurones in the body that controls voluntary muscle movements.
Abdullah was born on 27th October 2014 with no issues Alhamdulillah, at 3 months old we noticed Abdullah wasn’t bearing weight on his legs or lifting his head up on his own. We decided to take him to the doctors who referred us to paediatricians and many other experts. The wait was 2 months for an appointment in the mean time we tried everything from tummy time to massaging always thinking nothing was wrong and that he was just a little delayed. Appointment dates took forever to come and as he grew older we started noticing more symptoms. He was a lot floppier on his body joints and was reducing in body movements. When he was first seen by the paediatrician he confirmed Abdullah had hypotonia and further tests had to be done; these included MRI scans of the brain and blood tests but we were told it was definitely a neuromuscular problem we just didn’t know the severity.
He was booked in for an MRI scan the following week, Abdullah was sedated and scans were done. There was a sigh of relief as everything was normal but this never meant that there was no problem. We still had to wait for the blood test results. In the mean time we were referred to Great Ormond Street Hospital just for a physical check-up of Abdullah with a neuromuscular specialist. He was examined and a few things were explained to us when he looked at his movement of the arms, legs, head control and his tongue. He sat us down and told us he thought it was something we didn’t want to hear, that “Abdullah has SMA Type 1 for sure but we need to wait for blood test results to confirm 100%’’. We had already done our own research into possible problems he may have looking at his symptoms, so knew exactly what SMA was but always thought this cannot happen to us as this was the most severe condition he could have in neuromuscular. Upon hearing this our thoughts were he won’t be able to walk, crawl, sit, hold his head up and will lose the ability to swallow. SMA Type 1 is a life limiting condition and the main thing is there was no known cure.
We broke down not wanting to believe what this man had said; it wasn’t sure until he had the blood tests result. They gave us all this information and we travelled home rushing out of the hospital, eager to get home to feel safe and secure. All the way home just looking at an innocent face still smiling while we were crying we had 100 thoughts this can’t be it. We told our family members and they found it as hard to believe as us. A few days after was Friday the day we were going to receive the results for confirmation. All morning we waited anxiously until afternoon. The phone rang and it was the Doctor, his words were I’m very sorry but unfortunately it is confirmed your son Abdullah has SMA type 1. This was the day we cannot explain in words how we felt but simply our world fell apart. Our child only 5 ½ months old has SMA Type 1 and we did not know how many days he had left in this world.
We were still in shock but we had to think what we can do for him. We researched places where there were cures; we came across a few but with his condition it was risky to fly or travel. Just a few weeks later Abdullah was admitted into hospital with a viral bronchitis and was admitted for 1 week and made it back home.
Abdullah was able to eat and drink milk normally but as time went on he was admitted for pneumonia at the age of nearly 7 months this was the first time we had seen him so weak and helpless. He was in ICU as he was struggling to breath they placed him on CPAP; which is a treatment that uses mild air pressure to keep the lungs open when having difficulty breathing.
He also needed regular physiotherapy to help bring up all the extra secretion saliva from his lungs. Also a balloon type hood was used to give him a higher concentration of oxygen. However, he only had this on for the day as we decided to give him a chance to breathe without any assistance. Alhamdulillah Abdullah proved to us he could and he wasn’t on CPAP. He needed a bit of oxygen when he was asleep but as days passed he never needed it. We stayed in for two weeks on this second admission; this being the most severe. Since then we have had to suction him regularly, the physiotherapist taught us how to do this. We had to feed him milk through the NG tube but were allowed to feed him very tiny fluids or puree through his mouth. As the weeks went on this got even more difficult as he was not able to tolerate anything at all through his mouth, he was just unable to swallow anything normally including plain water.
The emotions of knowing that Abdullah will never be able to eat meals like a normal child still upsets us and brings tears to our eyes till this day. Everyone should appreciate and be thankful for what Allah has given you whether it’s little or a lot think of the less fortunate.
He has been admitted to hospital 4 times more but Alhamdulillah he has fought like a soldier and came out of the hospital well. He does need a lot of suctioning as he can’t clear his secretions on his own; it gets too much for him when he gets unwell. Abdullah is prone to infections as his immune system is weak so we have to be very careful not to let anyone unwell near him as this makes him work harder to breathe and at times needs oxygen.
From this day on our lives have changed, our son and daughter are our main priority. Our view of life has changed, problems don’t matter to us he is a blessing and we are more than happy to be blessed with a beautiful child. Having Abdullah has changed the way we look at life; to be patient at all times how to appreciate your children also being a better person within ourselves. We both weren’t praying regularly but we started praying and giving more sadqa. Each day for Abdullah is different we don’t know what can happen in the next hour let alone tomorrow so please everyone that reads this make dua for Abdullah may Allah give him shifa and show us a miracle In Sha Allah.
Please appreciate life, help others, give sadqa and don’t take life for granted. Keep praying as you never know what can happen at any time in life. This is where the idea came to set up a charity in honour of Abdullah with the great support of Mohamed Irfan Achhodi. The aim was to help those in need, the most vulnerable and less fortunate.
Whilst writing this and just before it was posted on our website, Abdullah returns to hospital with a breathing difficulty and is in ICU. In just 3 days he completely deteriorates and Allah SWT takes him up to be cared for by Allah’s friend Ibrahim A.S. and to enjoy the beautiful gardens of Jannah.
27/10/2014 – 05/12/2015
Story of our late son Abdullah by Shakil & Zainab Malji
Many thanks and show of appreciation to all volunteers who have made this possible.