A FUNDRAISING page has been set up to support house adaptations for three year old Leo who suffers with lissencephaly, a rare genetic disorder, writes Lola Griffin.
His mum, Suzanne Collins, set up the page in November 2024 in order to fund a wet room and a downstairs bedroom for Leo as he is non-mobile and is currently being carried around the house, including up and downstairs.
The family are lucky to have £50,000 funding towards the cost, but have been left a short fall of £28,218 – they need £78,218 in total to fund these adaptations for Leo.
Lissencephaly is a rare life-limiting genetic disorder which impacts one in 100,000 children in the UK.
After facing infantile spasms, a dangerous type of epilepsy, Leo was diagnosed with the disorder, leaving his family in heartbreak.
It all began when Leo was five months old and his parents noticed some strange movements.
Suzanne, an NHS community nurse, said: “We were concerned and we took him to A&E three times before we were listened to.”
Leo had an EEG which confirmed infantile spasms (a dangerous type of epilepsy) and it was then he was admitted into hospital and they preformed another EEG which eventually gave the family the diagnosis of lissencephely (smooth brain)
Lissencephaly affects a child’s tone, causes seizures, development delay, feeding issues and requires 24-hour care for the child – there is currently no cure for the disorder.
Suzanne said: “We have never asked for help before but we now feel we have no choice.
“We need to get our home adapted for Leo’s needs, we need a wet room, downstairs bedroom and hoist as Leo is non mobile.
“We simply don’t have the funds without taking loans.
“If we take out loans we could potentially put ourselves into financial hardship.
“We don’t expect to raise £28,000 but whatever we raise will help towards the adaptations.
“We are having to face things as a family we never thought we would face.”
Visit: gofund.me/67e1a353 to read more about Leo’s condition or donate to support him and his family.