Cobweb are proud to support Roald Dahl’s Marvellous Children’s Charity.
Cobweb is dedicated to supporting the Roald Dahl charity during Nurses Week (6th May – 12th May) through a series of events for the ‘Do Something Marvellous Week’. The primary goal is to raise the charity’s profile and donations towards their mission.
On Saturday 6th May, we participated in Fareham Parkrun to raise awareness and interact with runners before the start time at 9 am.
On Wednesday 10th May, we will host an office bake sale with staff preparing savoury and sweet treats to sell, with all proceeds going to the charity.
Finally, on Friday 12th May, we will undertake a charity walk from our office in Fareham to QA Hospital in Cosham and back, covering approximately 10 miles. At QA Hospital, we will meet with the Roald Dahl nurses to express our gratitude for their support.
Our efforts during Nurses Week aim to support the Roald Dahl charity’s vital work and to make a positive impact on the lives of children living with lifelong, complex conditions across the UK.
Why are we doing it:
Our Billing Manager, David Barnsley-Parsons has first-hand experience of the support that Roald Dahl Nurses provide after his daughter, Harriet was diagnosed with epilepsy.
“When Harriet was around 10 months old, we started to have concerns about her development. She was missing milestones and seemed to have plateaued in her development. After conversations with Community Paediatrics and several blood tests later, Harriet was diagnosed with a genetic disorder. The type of disorder she has is completely unique to her, caused by an unbalance in genes on chromosomes 9 and 10. Whilst very little is known about the extent to which this will affect her, the genes involved are linked to mild to moderate learning difficulties and global development delay.
As part of the investigation process into Harriet’s genetic disorder, an MRI scan of her brain was carried out and this highlighted several changes which we needed to be aware of. One of these made her more susceptible to developing epilepsy, however, it wasn’t until she was 2.5 years old when she had her first seizure.
Harriet’s seizures are prolonged (around 15-20 minutes each in length) so after her first episode we were given rescue medication to administer to her after 5 minutes of the seizure. Each time she has a seizure it involves an ambulance trip to hospital and monitoring to make sure she is recovering from the episode as expected and then a review of her medication dosage. She is very lethargic after a seizure and she will often then miss the next day’s activities.
When the diagnosis was made for Harriet, we did not know where to turn. There wasn’t a leaflet handed to us of people can help and support us through something we had no experience of. Harriet is now 4 and continues to have an irregular pattern of seizures. With the support of the Roald Dahl nurses, we have been able to manage her medication to reduce the severity of the seizures. They have been able to provide us with the information we need to spot the signs of a seizure and to help us be prepared.
As Harriet transitions to mainstream school, the nurses can be on hand to provide training to the school to help them prepare for caring for Harriet.”
The Roald Dahl Charity have said:
“This May, join us in a life-changing mission to raise 1 million pounds to provide vital specialist long-term care for over 1,000 children living with some of the most serious and complex conditions across the UK.
Roald Dahl Nurses currently support over 32,000 children living with lifelong, complex conditions across the UK. These children often have multiple health conditions, which require lifelong specialist care.
Specialist care from a Roald Dahl Nurse reduces A&E visits, hospital admissions, and consultant appointments. Roald Dahl Nurses work in hospitals across the UK and are a vital lifeline to the whole family, coordinating care, and providing access to professional emotional support.
Too many children with serious illnesses do not receive this vital specialist care. This stress places on these families is significant and relentless. That’s why we believe that every child living with a complex, lifelong condition deserves a Roald Dahl Nurse.”
If you’d like to support Cobweb during ‘Do Something Marvellous Week’, please donate to our Just Giving page!