Isma’s story

Three-year-old Isma was born with Ventriculomegaly, a condition resulting in the brain failing to develop and caused by a lack of oxygen. The diagnosis came as a devastating shock to mum, Mehnaz Patel, at 27 weeks into her pregnancy.

Her first child, Azaan, had been born with no health complications and there was nothing to suggest the pregnancy for her second child would be any different.

Mehnaz says: “After the diagnosis I was still very hopeful. I had faith that things would be OK, but when Isma was born that’s when it really hit home”.

The first year felt like a series of blows for Mehnaz and her husband, Yasin. They learnt that Isma was unable to walk, talk and had a visual impairment. She was losing weight, finding it difficult to eat and started to experience seizures with long recovery times.

The admissions to hospital were becoming increasingly frequent, putting an unbearable emotional strain on the family who lived in Leyton. In February 2017, a social worker referred the family to Haven House for some much-needed support.

Mehnaz says: “We were literally not sleeping. We were at breaking point. Accessing overnight respite made such a difference”.

When Isma comes to Haven House for respite care it means Mehnaz and Yasin can have a short break from the demands of caring for an unwell child with complex needs. Isma requires a lot of medication and her health can deteriorate rapidly.

Mehnaz says: “The staff at Haven House are amazing. To know they will care for your child in the same way as you is just the best feeling”.

At Haven House Isma enjoys yoga therapy which supports her mobility and co-ordination.  She loves to play in the sensory room and in the beautiful grounds.

Mehnaz says: “When Isma is well she is a very happy girl. She has a cheeky side and likes to interact with the world around her. At Haven House she has been able to go on trips. We love the family days in the summer”.

Isma’s older brother has started attending ‘Buddies’, Haven House’s sibling support group for brothers and sisters of children with life-limiting conditions and those who have experienced bereavement.

Mehnaz says: “Azaan recently took part in a Buddies day out at a drama school with unlimited pizza. He absolutely loved it. Haven House is for the whole family, not just the child who needs care. Through the coffee mornings I get to meet other mums in similar situations. It’s great to share experiences.”


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