An Eastbourne family have spoken about the care they receive from Chestnut Tree House Children’s Hospice in the hope that is will encourage more people to sign up for the Sussex 100 cycle ride.
The Hoadley family’s youngest child is Ellie, a mischievous four-year-old who is described by mum Jackie as a ‘little minx’ that bounces around and causes a general trail of destruction wherever she goes.
Ellie has cerebral palsy and epilepsy, is registered blind and is unable to eat solid food, meaning that she needs a lot more care than most other four-year-olds.
Mum Jackie, dad Ray and Ellie’s brother Mathew, who also has cerebral palsy and epilepsy, describe Chestnut Tree House as a home from home. They have used the service for many years as Liam, Ellie and Matthew’s other brother, sadly passed away at Chestnut Tree House in 2008.
Jackie said, “We visit the hospice a few times each year and like to come and stay as a family.
“We are so well looked after whilst we are there, it gives us an opportunity to really relax and spend time as a family. It also gives both Ellie and Mathew, who also has cerebral palsy and epilepsy, the chance to experience things that they wouldn’t normally get a chance to.
“For example, they can go swimming, have a bath or spend time with the play therapist, all things that just don’t happen in our day to day lives.”
The family also receive visits from Chestnut Tree community nurses at their home in Eastbourne.
Jackie added, “The nurses come and spend a few hours at home with the children so that we can go and enjoy some time as a couple.
“They also take the kids out, to the zoo or farm maybe, which is something that they both love to do.”
Beyond this the family have received all sorts of additional support from Chestnut Tree. Due to Ellie’s gastric problems she can spend up to a quarter of the year in hospital. This splits the family up and, due to Ellie’s complex needs, means that one parent has to be at the hospital with her the entire time.
Ellie’s Chestnut Tree Community Nurse will visit her in the hospital, giving mum or dad the opportunity to get out of the hospital for a few hours knowing that Ellie’s specific needs are understood and being catered for.
Now in its second year, the Chestnut Sussex 100 aims to raise funds to help families such as the Hoadleys.
The bike ride takes place on September 27, starting at Bentley Wildfowl and Motor Museum in Halland, and features a choice of three distances: 31km, 64km and 103km.
Jackie made a direct plea to would-be fundraisers. She said, “Chestnut Tree has done so much for us over the years, but the biggest thing they have given us is the opportunity to make memories, which is so precious to us. Chestnut Tree is always there when we need them – on our good days and our bad days. They have helped us make good memories as a family and also helped us through the bad times so that we can remember our children in the best way possible.”