Azeema’s Spina Bifida Story

Michelle and her daughter Azeema have been members of SHASBAH since Azeema was born. Michelle wanted to share the story of their journey with spina bifida to give others insight and also to shine a light on her daughter’s incredible resilience and happiness. We hope anyone at the start of their journey will find Michelle’s own words of experience a lighthouse when you’re finding your way.

“This is Azeema. She’s 4 years old. We got told at 20 weeks pregnant that she had spina bifida, and she has been our little SB warrior ever since. She is such an inspiration to us. Azeema is paralysed from the waist downwards with a neuropathic bowel and bladder. Yes, it’s hard work doing everything for her, but seeing this girl thrive in life makes it all worthwhile.

I don’t know what I would have done when Azeema was born without the support from SHASBAH and the other parents. They have helped me so much throughout Azeema’s 4 years when things have gotten tough and got me down. I have always had Nina and the group to turn to, even if it’s just to have a rant. They’ve helped me with medical advice and with Azeema’s needs. I’m so thankful for this. 

She stayed in hospital for the first 7 weeks of her life due to breathing issues and needing 24-hour oxygen. We then found out she had hydrocephalus, so she went for surgery at 5 months old. Just because she had this disability didn’t stop her being the happy child she is today and doing things any other child would do.

The biggest step I had to do in her life was to “let her go” to full time school. But it’s the best thing I have done, as she is the girl she is today: loving life, enjoying every minute, and totally thriving.

This is our story of our SB warrior, Azeema.”

Michelle and Azeema are inspirational for other families looking for support. Their journey may have taken a sharp turn at the start, but their lives have become filled with those incredible parent and child milestones.

If your child has a diagnosis of spina bifida and/or hydrocephalus, you can get in touch with us for support, including 1:1 support, meeting other children with spina bifida/hydrocephalus, equipment sharing, services signposting, and form filling help. Our experienced team work closely with medical experts at Sheffield hospitals and we also have contacts with organisations across the region to help you every step of the way.