A ‘CHEEKY” Bovey Tracey boy has died at the age of seven from a rare genetic condition.
Elliott Jackson died on May 7 from Battens Disease, an incurable condition which affects less than 200 children in the country.
His grieving parents Claire and Robert have raised more than £6,000 following his death to raise money for Little Bridge House children’s hospice where he spent his last days.
Their Just Giving page in Elliott’s memory has gone way beyond their £500 target to donate to Children’s Hospice South West which runs Little Bridge House.
In a post on social media, Claire informed the family’s local community of Elliott’s death.
She wrote: ‘I wanted to share with our local community that our wonderful son Elliott died yesterday.
‘We held him tight and told him how much we love him, how we'll miss him.... We are heartbroken.
‘We were supported through Elliott's last peaceful days by the wonderful team at Little Bridge House Children's Hospice South West.
‘Rather than flowers, any donations are greatly appreciated.’
On the Just Giving site, dad Robert described Elliott as beautiful and cheeky.
He said: ‘Whilst Battens Disease was cruel and unforgiving, he passed away without suffering.
‘He was surrounded by his mum, dad and big sister Faye at Little Bridge House.
‘Rather than receiving flowers or gifts, we are asking everyone to donate to Children's Hospice South West. ‘With their care and support, his last few days were calm and peaceful. We will be forever grateful for their support.’
Elliott was diagnosed with the disease at the age of four.
The symptoms include increasing visual impairment resulting in blindness, severe seizures, a decline of speech, language and swallowing skills, a deterioration of fine and gross motor skills that result in the loss of mobility, and difficulties sleeping.
Only four or five children are diagnosed with Battens Disease each year in the UK and most are unlikely to live beyond the age of 10.
It is comparable to dementia but predominantly affects children who lose the ability to communicate, see, walk and generally look after themselves.