Debra and Hyrum Platt recently came to the Orchard Centre to meet and tell Jenny Hammond, Community Children’s Nurse what a difference the monitor donated by the Friends has made to their lives.
Until she had the monitor Debra had to sleep downstairs in Hyrum’s room and could not get a proper sleep through worrying about her precious son. Now she can sleep in her own room with the confidence that should Hyrum have a problem through the night the monitor will alert her and she will be able to help him.
Jenny explained “Specialised equipment for children with complex needs can be expensive and difficult for families to be able to fund, and sadly not available via NHS funding. An epilepsy mat can make a difference of whether a parent can get a restful night’s sleep because they know it will alarm if their son or daughter has a generalised seizure. Children who suffer with complex seizures can go blue during a fit or worst case scenario-stop breathing. Interventions may include giving oxygen therapy and / or emergency medication to stop the seizure before the child becomes at risk of stopping breathing or other complications & timing is therefore of the essence in detecting the seizure.
These children are likely to have had adaptations to the family home to provide much needed facilities to meet their physical needs which means that not only does the child have their own room; they are downstairs, away from their parents. The epilepsy mat goes under the mattress and detects abnormal movements which are then alarmed to parents through a radio link by the bedside. They can make a difference of whether a parent can sleep in their own bed with proper monitoring or having to sleep on temporary beds next to their child.
As a result of support from Friends of St Cross, we have been able to loan out epilepsy mats to some of our most complex children in Rugby to help maintain a safer sleeping environment for the child and therefore family. I have had parents show true relief at acquiring such a mat because it meant that there was a system of alerting them immediately to the start of their child’s seizure, whilst the family slept.”
Willy Goldschmidt, Chairman of the Friends, said “It was a real pleasure to meet Debra and Hyrum and hear at first hand what a difference this donation and a previous donation of a bed bumper has made for this family. It is a privilege to know that the generosity of the community who support the Charity can be put to such good effect and we look forward to raising the money needed to develop the new Sleep Studies observation beds at St Cross which will bring a new specialist service to the West Midlands!”
Photo by Eddie White
L:R Debra Platt, Hyrum Platt and Jenny Hammond