I have been a single mum for the last 15 years. I have a twin sister and 4 brothers; we lost our parents when young and most of our relatives live abroad so my ‘family’ now also includes our lovely carers. 

My first child was a girl. She was diagnosed at birth as having MMA and lived for only 5 days. Because of this, I was monitored all through my last pregnancy as the specialists believed my baby would be a carrier of MMA. They tested him through the belly button, and I was told by my husband that our baby was affected by MMA. 

After receiving the diagnosis, I was depressed and felt very alone. Danny spent one week in special care and one week in hospital. Family came to visit and although I hoped for the best, I still felt fearful that I was going to lose my baby. Memories of my daughter came flooding back and I was scared the same would happen to my son. I had the emotional support of my family, but they didn’t fully understand my child’s condition. 

When Danny was three years old, I was told that he had the Mut 0 form of MMA (Mut 0 means there is no enzyme activity and is therefore the most severe form of MMA). I was never told about how severe it was, and I had to research a lot of information myself. There was no information out there for parents like me.

At the time I felt isolated and was not told about any organisation that offered support. From my own research, I learned that without treatment children don’t survive past two and a half, which made me feel so torn and helpless. However, I held onto the new knowledge that yes, it’s severe, but it can be managed if proper treatment and diet is put in place.  

Being both a mum and a carer was hard, my daily routine was watching the clock constantly to make sure medication, and the correct food was given on time as Danny had a restricted diet. I felt that my life revolved around doing my best to keep my child alive and at times felt like a prisoner in my own home. Talking to friends and family was hard as they didn’t understand Mut 0 and Danny’s needs. My husband also used to work nights, so I had to deal with a lot on my own and I felt mentally and physically exhausted.

The most challenging times were when I had to give Danny emergency feeds all through the day and night which was compounded by high anxiety and trying to keep my child well. I kept Danny out of hospital for 11 years, but it also completely burnt me out. I’m a Muslim and so I relied on my faith to keep me going, it played a big role in my life. Sadly, my marriage broke down after 16 years and I have now been on my own for 15 years. 

When I got back, I could see that there was something severely wrong. He was taken to hospital by ambulance and remained there for three weeks, ending up in ICU and doctors warned me that he did not have long to live.

As a Muslim, I started preparations for his death and as a mother, I felt that, after keeping him out of hospital for 11 years, I had let him down. A metabolic consultant at the hospital reassessed Danny’s treatment and his health began to improve – I believe this consultant saved my boy’s life.  The consultant also signposted me to Metabolic Support UK for support and advice. 

I nearly lost Danny twice, but I know that if the care and treatment is correct children with Mut 0 can live to adulthood.  I have worked for NHS for 26 years so have a lot of experience of hospital care from different perspectives and my advice is to be happy, surround yourself with good energy and never give up on your child. 

I empathise with other MMA families and hope my story passes on the value of positive thinking and the importance of reaching out for support, understanding and the recognition of balancing caring duties and parenting.