Aaliyah's story

Buy mum Sabrina.

In July 2015 my daughter Aaliyah was diagnosed with viral DCM (Dilated Cardiomyopathy). We’d spent six weeks trying to get to the bottom of her failing health, back and forth to GPs and the walk-in centre. We were told she just ‘had a bug’, that ‘it’s probably anxiety’ and ‘lots of girls her age have eating disorders’. But actually my little girl was in multiple organ failure and critically ill due to a virus damaging her heart and causing DCM. We were lucky. Aaliyah got treatment and medical attention in time to save her life and avoid any need for surgical procedures. But those first days in intensive care were like living my worst nightmare.

Nearly two years later our life has been changed irreversibly. Aaliyah’s heart is stable and her health has improved massively. She’s nearly taller than me (which I am less happy about). I gave up teaching to become Aaliyah’s carer and we have had to learn how to manage a life-limiting condition in a relatively short time frame.

It’s been a challenging journey. Supporting a teenager through the grief of losing her health and her control over her own life at such a key stage of her development, has made me long for my old day job. A positive mental attitude is great in theory but when faced with a moody teenager and the ongoing battles with various organisations to ensure she gets the support she needs (from school to doctors and the local authority)… it’s not always possible!

The struggles of parenting teenagers are well known, but add a disability like DCM and it’s impossible for either of us to know what’s teenage attitude and what’s the DCM. The emotional and psychological fall-out of having to deal with the immense changes have been the hardest part of
the process for the entire family.

We have had support through a local children’s hospice who have been a lifeline, providing a listening ear, respite care and a network of other teens and parents who understand our experiences. As a parent our worst fears are focused on our children and their wellbeing but as terrifying as it was to watch helpless while my baby was in the ICU (intensive care unit), my pride in the determined and resilient young woman she is becoming through this experience, is far greater.

©Cardiomyopathy UK. May 2017.