Vuzion UK Limited & Cobweb Solutions Ltd are supporting Roald Dahl's Marvellous Children's Charity.

On 6th August 2022 a team of employees and friends will be completing a 5k or 10k Inflatable Fun Run @ Goodwood Estate.

The Team taking part are:

• Chris Lee
• Alan Tanner
• Beth Tanner
• Jamie Merrett
• Craig Gordon
• Becky Griffin
• David Barnsley-Parsons
• Ben Barnsley-Parsons
• Beth Barnsley-Parsons
• Will Barnsley-Parsons

Harriet's Story

Fareham-based IT companies Cobweb and Vuzion have raised thousands of pounds to support our charity and help fund vital new Roald Dahl Specialist Nurses. Group Billing Manager David Barnsley-Parsons has first hand experience of epilepsy, through his daughter Harriet, and David and his family are supported by Roald Dahl Specialist Nurses Becs and Liz. We spoke with David about the impact their Roald Dahl Nurses have on his family.

'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 a number of 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 days activities.

Harriet’s seizure to date have happened whilst she is asleep. Which adds another layer of worry around monitoring her, especially through the night. It’s also hard as seizures come without warning and there’s
no predicting if and when the next one will be. You can’t wrap her in cotton wool, but equally it’s something always at the back of your mind.

We were referred to the Roald Dahl Epilepsy Specialist Nurses in August 2021. After Harriet’s first seizure, we were scared and unsure that what we were doing was right for her. We didn’t even know how
long a seizure lasted for, how long was too long and at what point we had to call an ambulance.

Our Roald Dahl Nurse Becs contacted us within several hours, talked through the episode Harriet had and gave us lots of information about what to look out for and how to manage any seizures. When Harriet had her first prolonged seizure, Becs was notified by the hospital and
she was in contact with us directly within hours, getting plans in place for any subsequent episodes.

Now with the support of Roald Dahl Specialist Nurses, we feel informed, reassured and empowered to make the right decisions to ensure the best outcome for Harriet.

Becs and Liz have been amazing at helping us as parents feel more in control with what is ultimately an out-of-control experience. They are always notified after Harriet has a seizure and within hours they are emailing us to advise on any changes to medication dosage and requesting this from the GP.

Becs and Liz are always on hand to answer any questions we have about Harriet’s epilepsy. We’ve recently had difficulty obtaining Harriet’s usual brand of medication, but one phone call to them and we were reassured about what alternatives there were.

Whilst it’s never going to be easy as a parent to see your child having a seizure, knowing there’s a plan in place to deal with it, and to follow up on next steps afterwards, helps us to know we’re doing all we can for Harriet in that situation.

We learn more about Harriet each day, what she will be capable of and what support we need to put in place for her. As she grows, her medication will need to be under constant review to make sure it’s at the right level to prevent her seizures ongoing, but Roald Dahl Specialist Nurses will be there to support us all along this journey."

During National Epilepsy Week in May Cobweb and Vuzion raised over £3,000. The companies plan to continue fundraising throughout the year to help fund more vital Roald Dahl Epilepsy Specialist Nurses.

Louise Griew, charity CEO said "Too many seriously ill children and young people experiencing epilepsy do not have access to a specialist nurse. We want to change this. 

We will inspire and encourage people to Do Something Marvellous and help us fund a new specialist nursing post in the NHS. This will provide a vital lifeline to hundreds of children and families - like Harriet and David - supporting them both clinically and emotionally."

Find out more about how to get involved and Do Something Marvellous here.