Chloe’s Story

Chloe is a special little girl. She loves to dance, adores her baby sister, Charlotte and has a big kind heart. Chloe has Koolen de Vries syndrome, but that doesn’t define who she is and her mum and dad, Melanie and James, are determined that Chloe should have all the opportunities in life that any other little girl might have.

Chloe sarted having seizures at nine months old and spent the next nine months of her life in and out of hospital, having test after test, all the while recovering only to have another relapse, the seizures taking their toll on her little body. Finally, the doctors were able to make their diagnosis. Melanie and Jame’s relief was short lived however, when doctors informed them there was nothing more they could do. For Chloe that meant having to fend with the physical challenges of the syndrome – faced with the possibility she may never be able to communicate or to walk and the seizures would continue, albeit somewhat controlled with medication.

Chloe’s mum and dad watched other children with the syndrome, unable to walk, living in a world that was disconnected from life and some having to be fed by tube. They were determined this would not be Chloe’s destiny, they knew that Chloe must have early intervention – physiotherapy and speech therapy to have a chance of leading a normal life. Melanie says the turning point for the family was when a place became available at Montrose. She says ‘It feels like we’re part of a family, Chloe isn’t a number, they’re invested in her growing and meeting her milestones.

Chloe is making terrific progress. She can communicate through sign-language and attends school, mainstream two days a week and a special school the other three days. Montrose helped with the mainstream school, facilitating meetings with the teachers to make sure Chloe had everything in place she needs to be ale to achieve. Melanie says ‘The big thing for Chloe will be to make friends and have friends around her. It’s not easy, but she has so much love and joy to give to others and with Montrose’s help we know she’ll have the chance to share it’.