Personal Stories – Max’s Story

Max’s Story

Max was born at 27 weeks weighing 2lbs. A month after he was born, we were told that he had hemimegalencephaly, a condition that was commonly linked with epilepsy.

At 4 months old, we were told that only half his brain was working and he may not walk or talk. My husband and I walked away from the hospital, in a complete daze.

It seemed as if we were completely on our own with no idea of where we should get help. By chance, we met a consultant a few months later at a general check up and she introduced us to Portage, our first sign of hope. Portage provided a weekly teacher who could come to our house to play and teach Max. At 4 years old, Max could walk but he had poor spatial awareness and he could only make vowel sounds. Nobody could understand him and he had no friends.

The local authority initially recommended that he should attend the mainstream nursery being looked after by a lunchtime supervisor, with no experience of children with SEN.

Subsequently, they believed he would be fine in a mainstream Primary school with a speech and language unit attached.​

We believed his needs could only be met by a special speech and language school and so we had no option but to meet the expense of taking our case to a tribunal.

In our case, the tribunal lasted two days, owing to the tactics used by the Council’s barrister. This increased our costs immensely as we were having to provide independent evidence from three experts, all of whom had to be there throughout. The second day of the tribunal was spent in the waiting area until we were advised by our lawyer that the Council would settle the case having had a late diagnosis of Max’s condition from Great Ormond Street Hospital (GOSH), namely that Max had Elephant Man’s Syndrome.

Now that Max is in a school that can meet his needs and offer intensive Occupational Therapy, Speech and Language Therapy as well as Drama Therapy, Max has grown into a lively, happy, confident and chatty boy who loves playing football with his friends. He still finds reading and writing really tricky but he is now in an environment where he can be supported and learn at his own pace.