Simon Allard is two-and-a-half years old and lives with his Dad George, Mum Fatima and twin sister Anabela in Bunwell, Norfolk.
The family have been receiving care and support from EACH since 2014 from our Norfolk hospice located in Quidenham.
Simon has complex healthcare needs and requires one-to-one round the clock care to manage his symptoms. He has Pfeiffer Syndrome; a condition where his skull fused before birth resulting in hydrocephalus (fluid on the brain), exorbitism (protrusion of the eyes) and breathing problems caused by blocked nasal passages and obstructive sleep apnoea (where the throat muscles relax or collapse during sleep). He also has Nephrocalcinosis (where calcium deposits form in the kidneys).
In his short life, Simon has undergone many operations and medical procedures to improve his health including shunts to control hydrocephalus, surgery to protect his eyes and airway and the insertion of a tracheostomy to aid his breathing. Simon’s twin sister Anabela has no medical problems.
Simon benefits from regular short-break care at Quidenham hospice which includes specialist nursing care and wellbeing support. He and his family have also attended special events and family support group sessions organised by EACH staff, both in the hospice and out in the local community.
Simon’s Dad George, said: “We were regular supporters of EACH long before our twins arrived; never thinking that we would one day be so grateful for their help.
“Simon requires one-to-one care around the clock which includes having his tracheostomy tube maintained at regular intervals to aid his breathing.
“Simon has day care at Quidenham which starts at 10am and ends at 4pm. The level of care he receives is great, knowing it’s being provided by fully qualified nurses and carers. There’s never been an emergency situation with Simon at the hospice, but we know whilst he’s there he is safe.
“He has access to all of the services provided including music therapy and the sensory room. We also like the fact that his speech is improving all the time as a result of the encouragement he receives from EACH staff.
“When picking him up at 4pm, he’s a very happy and lively little boy, eager to impress his Mum and Dad with all the exciting things he’s done during the day, especially his paintings!
“At home Simon has to be supervised at all times, as the accidental removal of his tracheostomy tube, during play for instance, is life-threatening. That is why we so highly value that time when he’s at Quidenham, when we can relax and catch-up on sleep.
“EACH and the staff at Quidenham hospice have been a godsend to us. As parents, they’ve given both of us, and particularly my wife Fatima, a break from Simon’s care and this probably can’t be understood by people without experience of it.
“We have also attended various social events put on at the hospice and find them invaluable, and a trip to Gressenhall Farm Workhouse where there were pirate activities, a picnic and an opportunity to explore the site, being a particular highlight.”
EACH has a vision to transform children’s palliative care in Norfolk to meet the changing and more complex care needs of children and young people accessing services and to meet the increase in demand for services. This includes a new purpose-built hospice called ‘the nook’ in Framingham Earl to replace the current Quidenham hospice which is extremely restricted in its facilities and development.
George continued: “As for ‘the nook’, the new Norfolk hospice, we think it will be of immense benefit, not only to us and the other children, young people and families who use the facilities, but also to the staff who work in the current hospice in Quidenham which is an old premises and not designed, or purpose-built, to deliver children’s hospice care.
“We receive invaluable care and support from EACH, but a new hospice will be able to better meet need and demand compared to Quidenham. A new hospice will make such a difference and it’s great to see the fundraising efforts going well to help reach a current figure of £2 million. There’s still a way to go, but support has been great so far and hope it continues to reach the £10 million goal.”
Click here to find out more about the nook appeal