The grandmother of a toddler who has a shortened life expectancy because of a rare disease is raising money for a specialist wheelchair which will help make the most of her “precious years”.

Two-year-old Elana Lamb was three-and-a-half weeks old when she started experiencing seizures and her family noticed her unusual eye movements.

At nine months old, after several MRI scans, she was given a likely diagnosis of hypomyelinating leukodystrophy, which means she has reduced white matter on her brain – and it will only deteriorate.

Over time, it will affect her spinal cord, causing difficulties with her mobility and functioning, and could shorten her life expectancy to just eight years. She is already partially sighted.

NHS wheelchair services said she is not entitled to a wheelchair until she is three so the toddler’s grandmother Ann Gardiner, 52, who lives in St Richard’s Road, Deal, and has guardianship, has taken matters in to her own hands.

She has already raised £1,500 online and through table top sales in her front garden but needs up to £5,000.

She said: “A wheelchair will help her posture marvellously. It would make such a difference to get her out and about in the fresh air more and for her to be more comfortable.”

Ms Gardiner has joined a Facebook group entitled ‘Delayed Myelination/White Matter Volume Loss’ for families affected by the condition to share information and resources. The condition is so rare it had only 13 members across the world.

There is no medication or cure. Doctors in America claim to have found a cure but treatment costs hundreds of thousands of pounds and is still in its infancy.

Because of her 90% diagnosis, doctors have not commented on Elana’s life expectancy but Ms Gardiner has read up online that she may live only to be eight years old.

She said: “When we were first found out we were blown away but we’ve had to come to terms with it and just try and make the most of her.

“I don’t want to be sat in with her all day long and not be able to get out with her.

“These years are precious.”

The wheelchair will provide Elana will sufficient support.

It will help with regular hospital appointments in London and prevent Ms Gardiner from carrying her, which she has been advised not to do.

The health issues between Elana and her mum Samantha, 23, who has scoliosis and learning difficulties, are very similar although Samantha has never been given a diagnosis.

Ms Gardiner described her daughter as a 93-year-old in a 23-year-old’s body because of her mobility issues.

The family have now enrolled onto the 100,000 Genomes Project to enable new medical research.

The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.

If you would like to make a donation to Elana’s wheelchair fund, contact the East Kent Mercury office on 01304 365526.