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raised by 310 supporters
Sarah Johnson avatar
Sarah Johnson

Ollie's page~ Our beautiful Angel xxx

Fundraising for Dravet Syndrome UK

raised by 310 supporters
  • Celebrating the wedding of Sarah and Stephen Johnson, 01 Sep 2012

Dravet Syndrome UK

We fund medical research & raise awareness to help families living with DravetSyndrome

Charity Registration No. 1128289


Our gorgeous little Ollie, just 2 years and 8 months old, an inspiration to us all!

He taught us to be grateful for every single thing we had, no matter how small, and to appreciate every single day! He showed us the meaning of happiness.

2013~ Ollie had lots of medication changes, and was having 12 syringes of medication a day to help control the seizures.

Ollie had 2 prolonged seizures at the end of March & start of April.

He sadly lost over half of his speech & his mobility was worse after these. Ollie attended regular speech & language sessions, but found the group environment a bit difficult! So we made our own ways to help support him at home, using pictures and cards.

He started nutricious milkshakes in June, due to his lack of interest in food, & thankfully gained weight and had more energy.

He also had problems with his heart rate dropping low at night time, I picked this up by using his saturation monitor, and i pushed for further testing. Ollie was found to have an intermittent complete heart block, & was taken to London 2 weeks later on the 1st August, to have 3 hour pacemaker surgery. Once again our strong soldier bounced back and was up dancing to Gangnam Style the very next day!!! 

We had had 2 amazing months with no tonic clonic seizures, although he still had his other seizures. We had just recently moved home and had found somewhere we would live forever! Things couldn't really have been better for us.

In November Ollie was found to have a hearing loss in both ears & required hearings aids. Of course he took to these straight away, because that's just what he did~ Ollie took everything life threw at him  and just smiled!


December was brilliant, we went on a steam train to see santa, we saw santa the musical at the theatre and he met the real santa too! 
Christmas day started out amazingly, Ollie was alert, happy and full of energy! 
At just before 6pm, Ollie had a seizure and despite giving emergency meds and oxygen, the seizure wouldn't stop. 
In fact it continued for 3 long hours. Staff at the hospital tried everything, to control it, he even had a line put into his bone marrow in the shin. 
Ollie was then put into an induced coma and finally it stopped. Tragically when the anaesthetic began to wear off Ollie started to have a different type of seizure. 
This continued again for hours, and a team of intensive care staff were sent down from London to take him there. 
It was hard for them to stabilise Ollie enough to travel in the ambulance, but thankfully they managed. 
They were amazing and so caring towards Ollie. 
Once we arrived Ollie was intubated again and he had over 10 canulas put in for different drugs.
He fought so very hard, but sadly too much damage had been caused by the seizure, and Ollie could no longer fight.
He fell asleep peacefully with us, and will sleep with the angels now in heaven.
Ollie was so cruelly taken from us, by something that we had absolutely no power over, and that is so terrible to have to go through. 
As a parent you are there to protect your child, and we tried, we really did, but Dravet robbed us of our beautiful Son and gorgeous big brother to his younger twin brothers Hayden and Harley.
Our whole family are feeling a pain that cannot be described.
We want to continue raising money & awareness in Ollie's honour and hope that one day a cure will be found for those living with Dravet Syndrome.
We cannot thank you enough for everything that you have done for us and the support you have given.
Thank you all for being part of Ollie's life.

please keep sharing Ollie's page to help us raise awareness of this evil condition xxx 

2011~2012~ Ollie had his first seizure at 4 months old, and now has regular seizures.

He has regular hospital appointments, he's had ct scans, eeg's,mri's, lumber, blood tests and many other tests that had all come back normal. He is on numerous medications. He had some genetic tests carried out in February and the results came back in April 2 weeks before Ollie's 1st birthday.

Ollie has now been diagnosed with Dravet Syndrome.

Estimates of the prevalence of this rare disorder range from 1:20,000 to 1:40,000 births.

We would really like to help raise money towards this charity, who have helped us so much .


They have so kindly funded Ollie for a pulse oximeter which is an invaluable piece of equipment, and we are so very grateful to them for this.

This is to monitor Ollie's oxygen levels when he's asleep.

Children with Dravet syndrome are at a higher risk of sudden unexplained death in epilepsy (SUDEP) than children with other types of epilepsy

If Ollie has a seizure, his oxygen levels will drop and this will then alert us to his seizure.

Therefore allowing us to administer his emergency medication, and call the ambulance.

This one item cost almost £1000, so I'm sure you can understand the importance of the funding.

Please also take some time to look at the website  and see some of the amazing work they do and the support they give to other families.

Thank you for taking the time to read this,




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  • Meeting santa 23/12/13 x
  • Gorgeous!!!
  • Ollie last month after 3days of seizures +6