Life’s short, but Rennie Grove nurses are there for those children in need of specialist care

PUBLISHED: 11:00 24 May 2018

Riley is being cared for by Rennie Grove’s children’s nurses.

Riley is being cared for by Rennie Grove’s children’s nurses.

Archant

Rennie Grove Hospice Care has joined with other hospice care providers in the UK to raise the profile of children’s palliative care during Children’s Hospice Week. This year the theme is “Life’s short”.

Rennie Grove provides a specialist 24/7 children’s hospice at home service for babies, children and young people up to the age of 19 living with a life-limiting condition in parts of Bucks and Herts.

Its team of specialist children’s nurses provide flexible and responsive care tailored to each family’s needs to help ensure that the children are able to fulfil their potential and enjoy the best quality of life possible. And when the time comes, it ensures that every child and family has the choice to receive specialist end of life care at home.

It is currently caring for 41 babies, children and young people.

Visit www.renniegrove.org/ourchildren to read about children like Riley and Stanley. They smile and giggle and win hearts just like any other five and four year old but sadly neither Riley nor Stanley is able to sit, walk, talk or even feed properly.

Both boys have been diagnosed with a very rare genetic condition involving a duplication of an X chromosome which has left them with very poor muscle tone and requiring constant care. Riley and Stanley are being cared for by Rennie Grove’s children’s nurses who also provide support to the boys’ parents, Shailza and Daniel.

Shailza said: “Knowing that there is help at hand 24 hours a day is immensely reassuring. I have also called them [Rennie Grove] at night for advice when the boys become ill and I was unsure about whether or not to call an ambulance. They will always offer advice and come out if needed and if the boys are in hospital they will come and visit.”

Rennie Grove works closely with other care providers to create a cohesive team around the child and family, but most importantly, it empowers families to care for their child and live a life as close to normality as possible.

It also offers a range of counselling and support services to family members including siblings of child patients and the children of adult patients.

Join the conversation on social media using #LifesShort and #ChildrensHospiceWeek and follow Rennie Grove on Twitter @renniegrove or like them on Facebook @renniegrovehospicecare. Visit www.renniegrove.org/children to find out more. Children’s Hospice Week runs until May 27.

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