The Children’s Respite Trust provides dedicated care for children with disabilities, and support for their families across both Sussex and Kent.
Their team of carers support children as young as 2 up to the age of 18, who often need 24/7 care.
The centre provides a range of play opportunities and activities for the children they support, whilst giving the rest of the family the chance to benefit from much-needed respite time and counselling. This care is also provided in the family homes.
The charity helps children like two-year-old Jaxson. When Jaxson was born he was found to have CHARGE syndrome, which is a disorder that affects many parts of the body and is caused by a chromosomal mutation. For Jaxson this means that the openings at the back of his nose were blocked and he struggled to breathe and feed.
This all came as a massive shock to the family, their lives were thrown into chaos. Jaxson stayed in hospital for the first 4 months of his life, he was a very unwell boy and his future was uncertain.
Jaxson has had more than 8 surgeries to date to give him a nasal airway, and will need 1-2 per year to widen this as he grows, he has lots of other health challenges that he also faces.
Jaxson’s parents were given a very bleak picture of how Jaxson was likely to develop if he survived his first year. Their lives were totally uprooted, and continue to be determined by Jaxson’s regular hospital appointments which can leave little time for their two daughters, Isabella and Poppy.
When his mum Vickie came to the Children’s Respite Trust she was struggling to manage her emotions and was feeling guilty about her focus on Jaxson and wanted some dedicated time with her daughters.
The Children’s Respite Trust were able to set up a support worker, Rhianne, to go in once a week giving Vickie a couple of hours to spend time with her girls. Vickie attended the charity’s parents group which gave Jaxson an opportunity to come and play each week, and Vickie an opportunity to meet other parents.
Jaxson, Isabella and Poppy have also attended school holiday activities at the Children’s Respite Centre giving Vickie a chance to have a short break in busy holiday times.
Global’s Make Some Noise is proud to support a Senior Support Worker to deliver six projects for children with disabilities and their families.
These projects all provide respite care for families – from sessions in their day care centre for children, counselling and wellbeing workshops for parents, respite visits at home, and Outdoor Adventure weekends for siblings.
With your help, we can support this charity and many more across the UK.