The family of a ten-year-old boy who has a genetic disorder have spoken of their joy at being able to make the important journeys they need, thanks to a specially adapted Motability Scheme car and charity grant.
Mum and Dad Charlene and Innes Londra, of Fife, say their transport needs for son Gino has grown over the years.
Gino has 1p36 depletion syndrome, a rare genetic disorder which affects him physically and mentally. He is a fulltime wheelchair user and at one point was having up to 800 seizures per month.
Support through the Motability Scheme
Gino’s family received their second Wheelchair Accessible Vehicle (WAV) as part of the Motability Scheme, and a grant of nearly £11,300 from the Motability Foundation last year, to ensure they can continue making the journeys they need.
Mum Charlene said: “He is lovely and life revolves around him. We have many hospital appointments, which we drive to. We have attempted public transport for days out, but it is much more complicated if he has a seizure.
“We need to get to places quickly. Knowing we have the car and can just get up and go, is a comfort. We would be completely lost without the Motability car and service. I am not sure what we would do if we didn’t have the grant.”
The wider challenges families face
1p36 deletion syndrome is a chromosome disorder that typically causes severe intellectual disability. Some affected individuals do not speak or speak only a few words.
Mum Charlene has said that more needs to be done to help with Gino’s condition, and in recent years they’ve had to fundraise to pay for medication. Because of Gino’s complex needs, Charlene said she has had to reduce her hours at work, which has affected her income.
Adapting to changing needs
Gino’s family have been using the Motability Scheme since 2018, and their current wheelchair accessible car is their third car lease with the Scheme. It’s also the second WAV that has been funded by the Motability Foundation - the charity which oversees the Scheme.
Charlene added: “It has a lot more storage space than the last one for all the bulky equipment Gino needs now he goes to respite every eight weeks, like his shower seat.”
Charlene said that using the specially adapted car allows them to have days out, meals, swimming or little holidays.
“It is much more complicated if we are on a train or a bus and Gino has a seizure or is tired. At one point, Gino was having up to 800 seizures a month.”
A commitment to accessible mobility
Gino’s family took out the lease for their Motability Scheme car last September. Funding for the vehicle came from the Motability Foundation, a UK charity which supports disabled people in accessing transport and mobility through grants, research and innovation.
CEO of the Motability Foundation, Nigel Fletcher, said: “It is always so moving to hear from families or individuals we have supported, and to learn of the ongoing challenges and barriers that still exist in simply getting from A to B.
“As a charity we are here to support people like Gino, and to ensure people with disabilities up and down the country are able to make the journeys they need.”
Share your story
If you’ve received a grant from us, we’d love to hear your story.
Through words, photography and film, we turn real experiences into powerful case studies that raise awareness and create impact.
Visit our Share your story page to get involved.