Date published: 02 April 2020 by Claire Coussins
Family Support Worker, Charlotte, gives Freddie time and space to understand his own feelings and emotions.
Just before her first birthday, Freya was diagnosed with a very rare inherited metabolic condition, Pyruvate Dehydrogenase Deficiency (PDH), characterised by a build-up of lactic acid in the body and a range of neurological problems. Parents Kelly and David were devastated when they first had the diagnosis - their whole world had been blown apart. They were told she wouldn’t even be able to hold her head up, yet she is now walking.
In fact, at seven years old she is a medical marvel and is doing brilliantly. Although PDH affects every part of Freya’s life - she can’t dress herself, her speech, vision and mobility are affected, and she needs a specialist diet because her eating and drinking is compromised - Freya is a determined, sociable little girl. Freya is non-verbal but she lives life to the full and wants to be treated as any other child would.
One of Freya’s nurses recommended Rainbow Trust to Kelly and David as they also have a four-year-old son, Freddie. Kelly explained to Family Support Worker Charlotte that their life unintentionally revolves so much around Freya that Freddie wasn’t getting enough attention, so they asked for specialist sibling support for him.
Freddie talks to Char-Char (his nickname for Charlotte), he opens up and tells her how he’s feeling. She listens to him and she’s trained to deal with anything he brings up. With Charlotte, he can get out any frustrations he is having – that time is just about him, not Freya’s feeding time, medicine time or therapy time, it is just about him.
“I can’t put into words the difference that Charlotte’s presence, expertise and specialist support has made to Freddie. I’m the mum of a child with severe needs and that time is very precious - I’m grateful for any time spent with Freya. But I feel guilty as Freddie is so different and both children’s needs are at opposite ends of the spectrum. So, the time that Freddie gets with Charlotte is all about him, nobody else"
Specialist support is very important for siblings of seriously ill children: it helps them understand that their sibling may die soon; they also get the tools to cope with that reality and to deal with the issues they face living with a seriously ill brother or sister. Freddie has seen Freya at her worst in a hospital bed and needed to understand and manage his feelings. He is a child living in an adult world so it is invaluable for him to have the time and space to let off steam and explore his emotions with Charlotte.
Rainbow Trust’s support gives Freddie a safe outlet and, if he raises anything that he is worried about with Charlotte, his parents are informed so they can talk about it.
“I think it is important that every sibling affected is able to share their feelings and worries. I think for Freddie, in the long run, it will make a big difference"
This vital support now, when it is seriously needed, will mean that further down the line Freddie will understand what is going on.
"I wouldn’t want Freddie to have been without Char-Char and Rainbow Trust. I know he is getting the best possible care and support he needs. Every sibling of a seriously ill child should have it."
Sibling support is one of the many ways a Rainbow Trust Family Support Worker can support families with a seriously ill child. To make a referral or find out more, please visit our support pages.
This piece was written before the situation with COVID-19 developed. Kelly recently got in touch to let us know how they were coping and how valued Charlotte's support is - now, more than ever. She said:
"Self isolating is tough on our whole family. The ability to do my every day jobs such as doing the shopping, and collecting my childs vital medication has been taken away from me. Leaving the house is too much of a risk. Knowing that Rainbow Trust are there for my family, and are able to do these jobs for me takes away some of my stress and worries.
Freddie has no consistency at the moment, no school to go to, no friends to see, no trips outside the house. Charlotte is his one constant at the moment as she video calls every week. Freddie looks forward to this as he gets to talk, and play games. Its really important to me that Freddie can still get his sibling support during this time."
