Harvey's Journal


Harvey was born on the 11th October 2007 and at 3 days old, after collapsing at home, he was diagnosed with Tuberous Sclerosis Complex and Epilepsy. They had found tumours on his brain, heart and kidneys.

In March 2008, he was diagnosed with West Syndrome or Infantile Spasms; a rare and very severe form of childhood epilepsy.

At 10 months old, after a regular check up with his cardiologist, Harvey was also diagnosed with Wolff-Parkinson-White Syndrome; a heart condition caused by the tumours in his heart.

In January 2011, he was diagnosed with Dystonia and was started on medication to relax his muscles. His mummy says this was the start of the downfall in his health, going from one infection to another and becoming totally dependent on oxygen.

He was diagnosed with Lennox Gastaut Syndrome and Chronic Lung Disease later in the year.

His family got to have him home at hospital for Christmas 2011 and he saw in 2012 with his loved ones but it wasn't long before he was back in hospital.

In May 2012, his family and the medical team decided to withdraw care and move him over to a hospice after learning that if he was ventilated again, it was unlikely he would come off the ventilator.

He was christened on the 5th May 2012 and on Monday 7th May 2012, he passed away in bed with his mummy at 6.43pm.

He was just 4 years old.

After Harvey's death, his mummy founded Harvey's Journal; which is a non profit organisation to help families of sick and disables children and to also help bereaved parents through their support group 'Look to the Moon'. They provide memory boxes and support for those who need it.

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