Kam & Rajan: Finding Hope, Strength and Balance
Hello, my name is Kam, and I am mum to Rajan, who was born in 2003. He is now 21 years old, and my caring journey with him has taught me so much about love, patience, resilience and the importance of self-care.
The Early Days
Rajan was my second child, much smaller than my first son, weighing 6lb 4 compared to his big brother’s 8lb 12. As a mum with one child already, I thought I knew what to expect, but every journey is different.
Rajan hardly moved, hardly cried, and slept a lot. At first, I thought I had a calm, easy baby. But as the months passed, I noticed he wasn’t feeding well, and breastfeeding was an exhausting struggle. By the time he was nearly one, he hadn’t reached his milestones, and the paediatrician noticed he looked anaemic. We were sent straight to the Children’s Hospital.
After many tests, including a bone marrow biopsy, we finally had a diagnosis: sideroblastic anaemia, a very rare condition. Rajan would need a blood transfusion every single month—for life. It was devastating news, and I felt the floor drop beneath me.
Living with a Rare Condition
Since that first diagnosis, Rajan has had more than 240 blood transfusions. Every four weeks, his red blood cells are replaced so his body can function. Alongside this, there have been countless hospital visits, MRI scans, hearing tests and consultations to manage the side effects of so many transfusions.
His condition is so rare that there are only one set of twins in the UK with the same diagnosis. Knowing this gave me both comfort and loneliness—we were not alone, but we also didn’t know anyone else living with this daily reality.
Coping as a Family
Life at home has not been easy. Rajan also has autism, which can make daily routines unpredictable. There were times he would scratch, bite or kick me, and family gatherings became a huge source of stress. Eventually, I realised I needed to draw boundaries and stop forcing myself to attend events that caused distress.
This was a turning point. I learnt that self-care isn’t selfish—it’s essential. As Carers, we give so much of ourselves, and if we burn out, we can’t look after the ones we love.
I now practise gratitude daily, whether by journaling or simply saying aloud what I’m thankful for. I keep a diary to organise Rajan’s appointments and make sure I also plan things for myself—walks in nature, yoga, massages, coffee in bed with a book, even watching the sunrise or sunset. These little rituals help keep me grounded.
The Importance of Carer Support
The Carer yoga sessions at Barefoot Birmingham have been a lifeline. They’re more than just exercise—they’re a sanctuary where Carers can move their bodies, release stress, and connect with others who truly understand. These sessions reduce isolation, lift mental wellbeing, and create a strong sense of belonging for people who often carry invisible burdens.
As both a Carer and now a yoga teacher myself, I’ve seen how powerful this support can be. It doesn’t just change lives—it saves them.
A Message to Fellow Carers
If you are reading this and struggling, please know you are not alone. Caring for a loved one can be overwhelming, but it’s okay to admit when you’re finding it hard. It’s okay to say no. And it’s more than okay to prioritise yourself.
Look for those small joys — a hot coffee, a walk, a rainbow after the rain. They don’t take away the challenges, but they give you strength to carry on.
Most importantly, remember this: You matter too.
Share Your Story
If you’d like to share your Carer journey and inspire others, please contact info@forwardcarers.org.uk.
