When Cecilia Bond learnt that she was pregnant, she thought it was a “miracle”. Having previously fought cervical cancer, Cecilia had been told that it would be unlikely that she would ever be able to have a biological child of her own.

But her joy turned to grief two months into her pregnancy when doctors discovered her son, Corey, had microcephaly - meaning abnormal smallness of the head and incomplete brain development. The diagnosis would change Cecilia’s life forever and marked the beginning of a never-ending rollercoaster of emotions.

She spent most of her pregnancy in hospital - a place that would become familiar to her and Corey. Cecilia would be unable to return to her career as a finance manager in the NHS because her son needs constant round-the-clock care.

He has lots of complex conditions including, degenerative brain disease, epilepsy, respiratory disease and brittle bones. He requires use of a wheelchair and he has to be kept at a 45 degree angle at all times in order to prevent aspiration pneumonia. Corey needs to use a nebuliser and suction machine and is tube fed which means it’s difficult for him and Cecilia to travel far.

Cecilia says:

When he was born in 2005, doctors did not expect him to live for more than a few weeks, but more than 11 years later, Corey is still here and smiling.

He is my miracle. The doctors don’t know how he still manages to smile. Every single day Corey wakes up in wonder as if it’s Christmas morning.

Taking care of Corey has been incredibly difficult for Cecilia. She is a single parent and sustained chronic injuries to her spine after she was hit by a car several years ago.

Corey is often critically ill and has had pneumonia 36 times in the last two years. He comes to Haven House for respite. It gives Corey and Cecilia time away from the noisy and busy environment of hospital.    

Cecilia says:

Corey and I spend most of our lives in hospital. When we come to Haven House, it’s such a relief, I know that Corey will be looked after and it gives me time to breathe again.

He loves music therapy, art and going to the sensory room. The care here is absolutely amazing. The nurses go above and beyond to make sure he gets everything that he needs.

Corey cannot see out of his left eye and is registered as profoundly deaf. But he can still hear sounds and interact with the world. 

He loves ducks, which he calls “babs”, meaning baby ducklings. Cecilia and Corey try and get outside whenever they can and Haven House is often the perfect setting for them.    

Cecilia says:

Corey first came to Haven House when he was three and very unwell. It was the same day as the Summer Fayre. Seeing so many wonderful sights in the grounds of the hospice completely lifted his spirits.

Life for Cecilia can often be very isolating which is why she also benefits from Haven House’s Toy Home Loan service. It means Corey gets to play with toys that are appropriate to his needs and visits from Haven House’s Toy Home Loan Co-Ordinator helps breaks up Cecilia’s day because she has another adult to talk too.

The future for Corey is uncertain. Cecilia knows that he is unlikely to reach adulthood. His brain is in atrophy, which means it’s wasting away. Some of his organs, like his heart, are already beginning to fail, yet Cecilia remains upbeat for her son.

Cecilia concludes:

As a parent you live for the moment. Haven House has given me some of my very best moments with Corey. I’m going to make sure he can continue to smile and be cheeky for as long as possible.

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