Project Description

Ollie Johnson

Ollie was born a beautiful healthy baby boy on the 21/4/11. On the 23/8/11, when Ollie was just 4 months old, our lives changed forever. Ollie had a 45 minute tonic clonic seizure. He was rushed to hospital via ambulance, eventually it stopped after having rectal diazepam administered. Ollie then stayed in hospital for a week. Seizures returned on a regular basis, and Ollie had a number of tests, including lumber, blood, mri scans and eeg’s all of which were normal. Ollie was started on medication, some of which aggravated the seizures and made him have more. Ollie’s seizure types were Tonic clonic, complex partial seizures, myoclonic jerks and absences.

In February 2012, Ollie was given a blood test that was sent to Glasgow to a genetic center for testing. Ollie was diagnosed nearly 3 months later with a rare and life-limiting form of epilepsy which only affects 1 in 30,000. It is called Dravet syndrome, and was caused by a mutation in Ollie’s brain. There is no reason for the mutation, it was there shortly after conception. My husband and I were both tested for the gene mutation and both of us were negative, which make’s Ollie’s mutation “de novo” (neither parent possessed nor transmitted). Medication was prescribed for Ollie and he was on four different types of anti-epileptic drugs. He took 12 syringes of medication a day to help control his seizures.

Many things would trigger seizures for Ollie, some of his triggers included tiredness, being too cold, or too warm, excitement, and many others. It was hard to know he couldn’t always join in with other children, as if he played in the paddling pool for too long or jumped on a trampoline it could trigger one. I had picked up problems with Ollie’s heart rate during the night, via Ollie’s saturation monitor. I pushed for further testing at hospital, and Ollie was diagnosed with an intermittent complete heart block in July 2013. In the beginning of August 2013, Ollie had 3 hour long surgery to insert a pacemaker. This meant his heart rate couldn’t drop below 45bpm.

Ollie had trouble with his walking and was quite unsteady, some days much worse than others. He also had difficulty with eating and sleeping. Ollie’s speech had also been affected by the condition, and he had lost more than half of his speech. Ollie had been identified in November 2013, as having hearing loss in both ears so had two hearing aids. I was very hopeful that these would assist him with his speech. Ollie used an oxygen saturation monitor every time he slept. He also had a seizure alarm that was under his mattress, and an anti suffocation pillow.

Despite what Ollie went through on a daily basis, he was always such a happy, loving little boy. He was an amazing, caring big brother to his younger twin brothers. He loved to play in the garden, and he loved to dance to gangnam style. Elmo was his favourite thing to watch on the television. We taught Ollie to use Makaton signing as his speech was deteriorating, he was incredible at it. Ollie had the most amazing personality, and his smile lit up every single room he entered.

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 tonic clonic seizure, and despite giving him his emergency medication 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 (Myoclonic). 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 after 2 and a half hours, they managed to transfer him. The ambulance staff were amazing and so caring towards Ollie. Once we arrived in London, Ollie had over 10 canulas put in for different drugs. He fought so very hard, but sadly too much damage had been caused by the seizures, and Ollie could no longer fight. He never regained consciousness after the first seizure. On the 27th December, Ollie 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. I had set up an awareness page for Ollie in October 2013. Please share Ollie’s pageto help us raise awareness of this evil condition

Many thanks,
Ollie’s heartbroken family xxx
ollie pics