Gravesend street party for toddler with rare genetic disease
PUBLISHED: 09:56 11 August 2011
»Faced with an uncertain future following the diagnosis of their son with an extremely rare genetic disease, a family is hoping to raise funds for a sensory room to aid his development.
Lee and Natalie Rhodes, of Epsom Close, Gravesend, will host a street party on Saturday to try and raise £5,000 to help their 14-month-old son Bobby James.
He was first diagnosed as having development problems in October, but an MRI scan in April revealed he had lissencephaly, which literally means smooth brain.
Mrs Rhodes, 24, said: “The worst part is the uncertainty. He is 14-months-old but has only developed as far as a five-month-old. No one has really been able to tell us how he will progress, if at all.”
Lissencephaly affects the brain but can have a huge range of severity. Some sufferers may die before the age of two, while others never develop beyond a mental age of five months, but some can progress to lead normal lives.
Bobby James attends a sensory room at the Riverside Centre, Gravesend, but his parents hope to set up equipment indoors to increase the chance of his learning.
A charity walk in March helped collect £7,000 towards a protective helmet for Bobby James, as well as covering medical and travel costs for Mr and Mrs Rhodes of which £1,500 remains, but a further £5,000 is needed for the sensory room.
News of the street party, between 11.30am and 2.30pm has spread and a Facebook page advertising the event indicates more than 80 people, including Robbie Firmin, the seven-year-old from Medway who charmed millions on this year’s Britain’s Got Talent, as supporters.
n For details of how to support the Rhodes family email firstname.lastname@example.org