This is the third donation that the Foundation has made to the James Hopkins Trust which provides free nursing led respite for severely disabled, life-limited and life-threatened young children living in Gloucestershire. They currently provide respite to 81 families and the money received from Matchroom Charitable Foundation has covered the cost of an entire year of respite sessions for a child.
James Hopkins Trust offers various respite services at Kites Corner, their purpose-built centre in Barnwood, Gloucester.
These include:
Whilst at Kites Corner, the children get the opportunity to explore the world through play and interact with their peers whilst our highly qualified nurse led care team ensure they receive all the specialist/medical care they require with minimal interruption to play and activities. The children have access to a large playroom full of specialist toys, our state-of-the-art multi-sensory room with heated waterbed, fibre optics and bubble tubes and our beautiful multi-sensory garden, complete with wheelchair friendly roundabout, musical instruments and sound wall.
The respite provided gives families/carers a much-needed break to recharge, safe in the knowledge that their medically fragile child is being safely looked after but most importantly their child is having fun. Ultimately, they aim to provide essential respite and support to families who have the responsibility of caring for their disabled child 24/7 without adequate assistance. JHT believe it is imperative that families with children who have severe disabilities or life-limiting conditions receive the same opportunities and experiences as any other family.
Freya lives with an extremely rare genetic condition called NKH (Non-Ketotic Hyperglycinemia) and requires 24/7 care. NKH is life-limiting, one in 3 babies with NKH do not survive their first year and most tragically pass away during childhood.
Freya requires intense supervision and medical interventions every single day. The trauma of her early life and diagnosis has taken a huge toll on her parents’ mental health and relationship. Her Mum has become Freya’s full-time carer and juggles her needs, routines, medications etc every day whilst carrying the weight of knowing she will outlive her child.
Freya has been attending Little Kites respite sessions at James Hopkins Trust once a week for over a year now. These moments of care mean her mum can reclaim a small sense of normality, without navigating a pram, medical equipment and strict schedules.
‘JHT gives me a few precious hours to just feel like me again. I know Freya is so well cared for there- they know her, her little quirks, and exactly what she needs. They are absolute angels, and Freya loves going. It’s also where I’ve met other parents who just get it.’
The James Hopkins Trust said of the support – “We couldn’t do what we do without the support from grant-giving trusts like Matchroom. Thank you from the bottom of our hearts.”
