Six-year-old Isabella Benton lives in Dereham with her mum Michala, dad Roger and sisters Aimie, nine, Daisy, four, and Molly, two. Isabella has a number of neurological conditions including complex refractory epilepsy and global developmental delay, as well as developing psychological and behavioural issues.

 

Isabella BentonShe has up to three tonic-clonic seizures – a type of generalised seizure that affects the entire brain – and takes four anti-convulsant medicines twice a day. Isabella has the seizures mostly in her sleep, so Michala and Roger have a camera in her bedroom. They rarely get a good night’s sleep, sometimes not sleeping at all, and have had to change their working patterns. The seizures have reduced in frequency over the last few years, but appear to have become more violent.

In March 2015, Isabella underwent invasive monitoring before being offered major surgery to try and stop her seizures. Deciding whether to accept the surgery was an agonising decision for Michala and Roger, with it carrying risks such as partial or permanent paralysis and loss of vision. In addition, the chance of the surgery being successful was more optimistic than favourable.

Later in the year they went ahead, but the surgery was unsuccessful in stopping Isabella’s seizures. Initially it seemed there was no benefit to have come from the surgery at all, with Isabella’s condition being no better than beforehand and her having picked up psychological and behavioural issues. This led to Michala being diagnosed and treated for depression, while Aimie received additional specialist play therapy from EACH.

Isabella has since made progress in a range of areas and her once evident left-sided weakness is now far less obvious. Additional medications also mean she is more abled than she has been for some time, however, she still requires constant supervision.

Isabella enjoys specialist play at the hospice. It helps her to learn and develop life and social skills, at a pace and level of understanding that is relevant  to her. She especially likes being creative and making a mess! At the hospice, Isabella particularly likes the paints, often heading straight into the art room.

Michala said:

We’ve now been receiving care and support from EACH for the past four years. We receive respite care twice a month, when Isabella will stay at Quidenham for three nights at a time. We also have nurse home visits, parent support, counselling and specialist play for Isabella.

 I can’t imagine what life would be like without the care and support from EACH. It gives us the time to do things with our other girls - simple things like going to the park, baking cakes, going for a picnic or to the seaside - things which are a challenge for all of us to do with Isabella.

Respite care is like a home from home and we don’t have to worry about Isabella as she loves her stays. As parents, we feel relaxed as we know she is safe and extremely well cared for. Last year we were able to relax on an overseas family holiday as Isabella was being cared for by EACH. If this hadn't happened, we wouldn’t have been able to go away and spend quality time with our other girls.

Our daughter, Aimie has benefitted from art therapy which has helped her to understand her feelings and to realise that is ok to get upset at certain times. She also attends Sibz, the group aimed at siblings. Sibz shows Aimie that she is not alone and there are other people out there who have special people in their lives, which can sometimes dictate day to day activities that most people take for granted.

The nook will be much better as it will have a hydrotherapy pool, which Isabella can use to strengthen her body tone. Although now more able-bodied, she’ll be able to get around in her wheelchair as the building will be on one level and be spacious.

Isabella, like many children with special needs, loves anything sensory as I believe this is how she learns. The new sensory room and equipment will give her the stimulation she needs. She loves being outside and the nook will have purpose-built grounds with beautiful scenery, again to help stimulate her needs for play in the fresh air in a safe environment.

When Isabella was born she was a healthy, happy baby - all you hope for when you have a baby. We had no reason to believe she wouldn’t grow up to be a happy, normal adult. At seven months old, Isabella’s and our lives changed forever. This kind of thing could happen to anyone and you never know if you will need the unique service given by EACH. Without people donating money, EACH would not exist and where would children like Isabella or families like us get the help and support we need? We hope people generously support the nook appeal to help families just like ours.  

 

Read more stories to find out what life is like for other families caring for a seriously ill child.

Please make a donation to support children with life-limiting or life-threatening conditions or show you support by fundraising during Children's Hospice Week.