Isolation isn't new for us, it's a way of life

Isolation isn't new for us, it's a way of life

Rainbow Trust
Isolation isn't new for us, it's a way of life image

Date published: 30 April 2020 by Digital Team

For families with a seriously ill child, isolation is something they are already familiar with. Here, Louise - a parent we support - explains.

When the country went into lockdown in March, people started experiencing how my daughter Jessica and I have lived for the last 16 months.

Jessica has a genetic condition and was admitted to Great Ormond Street Hospital in November 2018. We were immediately put into isolation. Jessica could no longer see her brother or school friends and, although there were another 10 children on the ward, they were not allowed to play with each other.

Jessica would have nurses and doctors coming in throughout the day, one hour of school a day - sometimes a play worker or volunteer visit her for an hour - and then an hour of physiotherapy twice a week. She had no contact with other children, except a visit from her brother once a week when the doctors decided that it was safe to do so.

In 2019, we were referred to a local hospice and had some respite sessions away from the hospital environment. We were referred to Rainbow Trust and had a Family Support Worker assigned to us. I chose to have Rainbow Trust to mainly support my son (who had had to move in with my parents) with sibling support until Jessica is allowed home. They began collecting him from school once a week and taking him to his after school club before taking him home. They also bring him to see his bereavement councillor at Great Ormond Street. This service has really helped us as a family.

In March 2020, all our support was stopped due to the Coronavirus and the whole country going into lockdown.

Jessica no longer has school or volunteers visiting. She has physiotherapy once a week with whoever is available. She can’t see her brother or leave her room anymore. Her days are spent in the same room watching the television, or with just me to play with.

It has been very hard, not only has it been hard for me but also for my son Alfie because unfortunately I lost my husband in the December of 2018. So we’ve not only had to deal with Jessica being in hospital and being separated but we’ve also had to deal with losing my husband as well.

Rainbow Trust work for the whole family so they support me, Jessica and Alfie. At the time, I decided Alfie was more important because Jessica was getting the support at GOSH.

Rainbow Trust stepped in, they built a bond with him, they pick him up from school, they give him emotional support and he is now starting to open up talking about his Dad.

When the country comes out of lockdown, people will resume there normal lives. Jessica won’t. She will still be in isolation. Even when we come home from hospital we will remain in isolation until her immune system has recovered enough for it to be safe for her to start being a child again.

I will need a lot of help from Rainbow Trust to help us become a normal family again and I now worry that the funding isn’t going to be there to support this.

Rainbow Trust Family Support Workers are giving emergency practical, mental, and emotional health support 24 hours day to vulnerable families, like Louise's, through this crisis and beyond. But we can only continue to do this if we have the money to fund it. Please help us to continue supporting these families - they are more in need than ever.

Donate to our emergency appeal here.