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My story:

I am participating in the Blood Fitness White Collar Thai Boxing event on Saturday 21st March and I have chosen to raise money for Family Nursing - Palliative Care Pathways. This is a charity close to home due to my nephew Kian being under their care. He has bilateral renal dysplasia and is now at stage 4 chronic kidney disease which means he's kidneys were not formed correctly when he was born and are covered in cysts. He will need a transplant in the near future or will end up on dialysis. I would like to raise money to support this charity to allow them to continue the hard work that they do with all the children under their care.

Here is so information about the Palliative Care Pathway and what they do:

The paediatric care worker role provides essential respite for families with life limiting and life threatening illnesses. Respite care for children with these conditions allows them the same opportunities as other children, including fun days out and activities where they need additional support. This in turn enables them to achieve their goals and have the same experiences as others whenever possible.

We embrace the emotional, physical and social aspects of a child with needs life and do our absolute best to enhance the quality of life. Ensuring that the children are able to challenge themselves physically by joining in with outdoor play but also emotionally have someone to talk to and express how they feel about their diagnosis and the impact it has on them and their families.

Over the last year we have had the opportunity to talk to families about what the paediatric care worker role means to them, with the knowledge we have gained from the families involved and also from having networked with other agencies and professionals we have been able to create a role we know is beneficial to all who access it. The role continues to evolve as we work alongside families to ensure they receive the kind of care they want, as well as need, this will be something we always strive to achieve. The support offered to each family is variable and uniquely dependant on their needs and circumstances.

The funds raised will go towards the funding for the paediatric palliative care worker role, enabling the terrific work that FNHC do to support the 36 families and their children to continue.

The help we give varies from family to family, we make sure that we see all the families and children involved as individuals and ensure the respite given best suits their individual needs. From help with personal care to attending hospital appointments when needed. Distraction play is something we do often and works well particularly for the younger children who are frightened of certain procedures for example blood tests. We take our time to get to know the children so that they can feel comfortable with us and accept that we want to help them.

Respite can be helpful for the entire family and not just the child in need, offering respite gives a family the chance to spend quality time together either with other siblings or with friends safe in the knowledge that there child in need is being cared for.

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