Roxanna’s son, Maaz, has Duchenne muscular dystrophy and autism. She shares the heartbreaking reality of these diagnoses, the isolation that has come with them, and what she has learnt over the years advocating for her son.
We waited a decade for our son. Then we found out he had Duchenne.
After ten years of hoping and praying for a child, me and my husband felt so blessed when Maaz was finally born. To us, everything looked perfect. Every smile, every step, every little thing felt like a miracle. So when something wasn’t quite right, I didn’t see it.
It was Maaz’s nursery who noticed something first. They told me he wasn’t getting off the floor properly. I remember thinking that he was just a bit behind. That’s all. I’d never heard of Duchenne muscular dystrophy or even autism. Those words weren’t part of my world. I guess they’re not part of anyone’s… until they have to be.
When our world changed forever
When the referrals started, we never imagined it would lead to this. In a short space of time, my son was diagnosed with Duchenne muscular dystrophy. Then autism. In that same year, my husband lost his job.
Everything seemed to fall apart all at once. And when I found out I was the carrier for Duchenne, the guilt nearly destroyed me. I blamed myself. I kept thinking, ‘this is because of me.’ I even thought ‘if I’d known before, would I have had my son?’ That thought still haunts me. But it’s my truth, and I know other parents feel it too, even if they’re too afraid to say it.
The loneliness is one of the hardest parts
People say you’re not alone, but most don’t know what to do or how to support you when your child receives such an awful diagnosis.
My husband loves our son, but his way of coping was to stay busy with work. My family didn’t offer much support. I asked for help, but I don’t think they really knew what to do, and that soon translated into silence. It’s been five years since Maaz was diagnosed, and it took me this long to realise they don’t really understand because there’re not living it every day.
Two of my siblings live a street away. I go to my mum’s house most days. And still, I feel like I take a back seat. I don’t overshare anymore. I don’t want to be a burden. I’ve found loneliness to be one of the hardest parts of all of this.
The future petrifies me – but I try to focus on the present
Sometimes I spiral thinking about what’s coming. Worrying about his heart. His lungs. The reality of what ‘muscle wasting condition’ means. I know I shouldn’t go there, but as a parent, how do you not?
These thoughts are always there in the background, but when they start to get too overwhelming, I try to focus on Maaz as he is now.
My son’s a happy little eight-year-old. He’s so loved. He knows how to play me and his dad off against each other very well… he usually gets his own way. He’s just learning to talk, and when he calls me “Mama,” it makes me so emotional. I never thought I’d hear that word from him; the doctors told us he’d probably never speak.
He doesn’t complain. He uses a wheelchair at school, and we’re waiting for his Motability car. Eating is a constant worry. He’s a very fussy eater, and his weight can drop so quickly when he’s unwell. But he’s blissfully happy despite all this.
The right education has been amazing for Maaz
School has probably been the biggest game changer for Maaz. Every mother imagines their child going to mainstream school, but I knew that wasn’t right for my son, and I put him first in everything I do.
In Maaz’s school, there are six teachers to ten children. They have hoists. They meet his needs. He loves it so much that he gets upset towards the end of half term because he misses school. It’s the best decision I’ve made for him, and I know now a mother’s gut never lies.
My culture has felt like another challenge
In the South Asian culture, children with differences aren’t always accepted. Some people think I should hide my son away. People say things like, “He’s silly,” or “He’s mad,” and that really hurts because he’s not. He just needs care and support. I won’t ever hide my son because I’m proud of him and how far he’s come.
Over the years, I’ve learnt that love is the biggest gift we can give our children. I spent a long time blaming myself for my son’s condition. To any newly diagnosed parents, don’t blame yourself; I carried that guilt for too long.
Maaz is my world. And even when I feel completely alone, I just look at my son and know that he is worth all of this.
