Sophie's Story

Life can be incredibly difficult caring for a child with complex disabilities. But for every family, there are special moments to cherish.

Victoria, mum to two-year-old Sophie, tells their story: 

After a normal, healthy pregnancy I had a long labour and Sophie was finally delivered with forceps. She did not breathe for more than 10 minutes before being resuscitated. My husband Phil and I knew immediately that something was seriously wrong. We were warned that it was likely that she would have brain damage due to lack of oxygen and she was transferred to intensive care in a major children’s hospital.

The first few weeks of Sophie’s life were extremely stressful and upsetting. She was not expected to survive – but once it was clear she was determined to keep going, we were able to bring her home via a short stay at Demelza in Eltham, South East London. At a highly distressing time, the hospice was a calm, welcoming place with caring and professional staff who looked after the whole family. We spent a few days with the palliative care nurses until we felt confident enough to look after Sophie at home.

The three years since have been unbelievably difficult as we have battled to control Sophie’s epilepsy, overcome her difficulties feeding and manage her complex conditions.  She often wakes several times in the night and this will mean comforting her or, failing that, getting up very early with her. She can’t move about on her own so she needs to be carried everywhere.

I feed her breakfast and then sit with her while she has a tube feed of water with her medicines. Then I take her to nursery or to activities at our local children’s centre, some of which I’ve set up so that we can meet other families in our situation. Sophie has five meals a day that have to be carefully weighed and designed for her special ketogenic diet, which takes time to prepare.

Since Sophie cannot move or play independently, and she could have a seizure at any time, she needs constant supervision and stimulation while at home. She also has a long list of therapies I try to help her complete to manage her conditions and help her development.  But often whole days are spent transporting her to and from medical appointments in central London and waiting to be seen.

Thankfully we are able to go to Demelza for respite.  Sophie loves all the attention she gets and she has lots of fun every time she goes.  She enjoys a wide range of activities - painting, baking, music therapy, having a bath and a pamper session, playing on the magic carpet or with the switch-activated toys, visits from the visiting Giggle Doctor performer, exploring the garden, and trips to the park or a farm.

Demelza has been a huge help to us. Our close family live hundreds of miles away and so it is a great comfort to know that Demelza is there should we need help with care for Sophie that we can’t manage between us. We have been able to get great advice from staff and other parents as well as the pleasure of seeing Sophie enjoying herself, whether at the facilities in Eltham or the hydrotherapy pool at the Sittingbourne hospice or the special events and parties.

Sophie’s needs mean that, other than our respite days at Demelza, we have very little time off and it has at times left the whole family exhausted. But overriding it all is our love for Sophie and our joy at seeing her development.

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