Abdullah: Our Little Teacher

Michael's story-ALD

Abdullah was diagnosed with the Molybdenum Cofactor Deficiency type A (MoCDA).

Here, his mother, Sabiha, shares insights into their life adapting and learning about this condition.

Abdullah found peace in December 2022 and it is with enormous gratitude that Sabiha has allowed us to share the story of her son and her continued journey of learning, connections, and support with a huge focus on wellbeing.

Our little teacher

Our first carer had a rather overwhelming welcome into our home. I opened the door with a screaming baby in my arms, an oxygen tank on my back and the top of a Bolus feeding syringe in my teeth. By some incredible mercy, she came back

Like each stage of my journey, I was not relieved of the challenge but instead given the love, support and tools to learn how to ride the wave while holding tight to my little teacher. Each time I asked myself, “is this really happening?, his little smiles, tight grip on my finger and the new developments he made would leave me in awe and humility.  

I still remember his first smile. His first giggle. The first time he managed to lift his head up and take his own trousers off by kicking his legs in every direction he could. The joy and giddiness upon hearing the sounds of his cousins enter the house. The little sigh of relief when I placed him in a warm bath each morning.  

But with those wonderful memories I cannot, and do not want to forget, his first seizure after he returned home from hospital. His first hospital admission, first ambulance call, and every single time a doctor or paramedic began the sentence “if he stops breathing…” 

All of this was part of my life as a mum of a complex child. All of this was part of my learning, growth and just the utter honour of caring for him through the smiles, sickness and sadness.  

Although I respect that doctors and nurses have particular expertise, as a parent I still firmly believe I am an expert in my children.

Our son Abdullah was diagnosed with Molybdenum Cofactor deficiency type A (MoCDA) when he was several days old. His body lacked a co-enzyme to break down sulphite which led to global development delay and quadriplegic cerebral palsy.  

Before we even left hospital we were incredibly blessed to have a community palliative nurse who was accessible, compassionate and supportive throughout our journey. She was consistently willing to provide us with information, help us understand decision making processes and made us feel truly involved and listened to in our son’s care.  

Although I respect that doctors and nurses have particular expertise, as a parent I still firmly believe I am an expert in my children, and I was deeply grateful when that was acknowledged in conversations and decisions around his care. It helped me develop the courage needed to limit his interventions in hospital and to seek other therapies and lifestyle changes that would allow us to manage his symptoms better.  

It’s the first time in my life I really understood the value and role of medication in symptom management. However, I would encourage all parents to research their children’s symptoms and investigate other options to help compliment medical intervention. For example we found private physiotherapy invaluable. Private physiotherapy really allowed us to understand what was happening in Abdullah’s body and what we could do to help him develop his physical abilities, calm his neurological symptoms and manage his dystonia.  

Connection is key with all children but takes extra effort with a non-verbal or additional needs child.

Abdullah communicated to us all the time in many different ways. But he was not pulling on my trouser leg while I cooked like his brothers had as toddlers. In order to benefit from his communication, I had to learn to pay attention to him. After some sessions on Rhythmic Movement Integration Therapy, Anat Baniel Therapy and researching the Feldenkrais method; I tried to schedule time where we were not necessarily “doing” anything, but I could pay attention to his subtle movements, give him my full attention, and allow him to express himself in his own unique way.  

Most parents will have a timetable for medications, feeds, re-positioning, nebulisers and so on. But I also think we need to force ourselves to include small opportunities for genuine connection with our children because sometimes the sheer volume of their care and the worry of them deteriorating or being uncomfortable in any way can distract us from what they are actually sharing with us.  

When the brain and body are under so much stress it’s so important to increase calm, as well as prioritise self-care and routine. I found that the more I looked after myself, the more I could look after Abdullah and find he was calmer and easier to manage also. I think we have to accept that some lifestyle choices do exacerbate our own stress and we have to look at long term changes instead of seeking short term distractions. Smart phones are an excellent example of this. They increase our stress levels, affect our sleep and make it difficult for us to focus on one thing at a time. My Abdullah hated my smart phone. There were times he would be screaming himself blue and the second I put it away he would just smile silently at me. I found it helpful to invest in a small simple non smart phone for the day-to-day calls and messages his care required.   

Abdullah also really enjoyed hydrotherapy, play therapy, painting and time in nature. I’m so grateful for our play worker and occupational therapists who helped me access opportunities I could have never managed alone. Having a wheelchair, stander and seating at home made such a difference to us. I would tell all families that if you think your child will benefit from something, ask for it, push for it, seek other opinions, look for funding and just keep trying. It is so worth it. Join online forums, find community groups and other parents and see what is out there that could help your child to get out of the house, to play, to paint, enjoy family gatherings, have calmer nights…whatever it may be.  

My son didn’t want anyone to feel sorry for him. He was the sweetest, most genuine example of positive determination you could imagine.

The final thing I want to mention is how caring for someone with a Metabolic condition can be so isolating at times. Not just physically, but also in the different mindsets we encounter. My son didn’t want anyone to feel sorry for him. He was the sweetest, most genuine example of positive determination you could imagine 

I often wonder why as a society we are so scared of disabilities and illness. I feel it’s the same as our other fears – we just lack information and perspective. For me my religion Islam gave me a clear outlook on my child being a person of Paradise gifted to us for a short while. A gift we could never truly appreciate or deserve but just sought to learn from and care for with all the energy, information and gratitude we could hold onto 

Abdullah’s mum, Sabiha, has created a wonderful blog about her experiences of MoCD in the hope other families can learn from her insights. You can access the blog via this button:

Want to share your story? Please email Toni (our Communities Engagement Officer) via: toni@metabolicsupportuk.org

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