A THURROCK mum has told the story of her son, struck down by a debilitating and potentially life-limiting 'one-in-a-million' condition in a bid to help a camp[aign to find a cure – that might save his life.

Emily Elwood from Horndon on the Hill gave birth to son Freddie in May 2021.

She says: "He was a happy and healthy baby until around 18 months old when he began to regress — losing balance, strength, and speech.

"After a long journey through tests and hospital referrals, Freddie was diagnosed with Infantile Neuroaxonal Dystrophy (INAD) in November 2023 — a one-in-a-million disorder with no cure and a life expectancy of just five  to 10 years.

"Freddie can no longer sit, crawl, or swallow. He is non-verbal and has limited understanding. The condition is so cruel.

"But there is hope: a gene therapy clinical trial is in the final stages of development and could potentially halt the condition's progression."

The trial is being supported by the INADCURE Foundation, which is fundraising because INAD is so rare, the research lacks commercial funding and urgently needs public support.

Emily is supporting the campaign to get this trial underway, and give Freddie a fighting chance, by supporting the campaign and she has launched a fundraising page that has already raised £21,720,

Freddie is Emily's second child and she says his birth 'completed our little family'.

She says: "At 18 months we noticed Freddie was starting to regress in his motor skills and had become less vocal. He started to lose his balance and core strength.

"Months of waiting for an appointment we finally saw a paediatric doctor who expressed major concerns and referred us to Great Ormond Street Hospital.

"More months passed, test after test, agonisingly waiting for results and being no closer to any answers.

Until one day genetics got involved. In November 2023, Freddie was diagnosed with INAD. Our world fell apart.

"However, we were told there was ongoing research into a gene therapy for Freddie's condition and that it had been going on for some time. More than a decade!

"We met with the team in Feb 2024, but left disheartened as the research wasn't as far along as we had hoped.

"Fast forward to this year, they have made great progress and are on the final stretch but unfortunately, it's now coming down to money. Because it is such a rare condition, the big biotech companies don't see a profit in it.

The INADCURE foundation, a non profit charity organisation has set up a movement called #workingonamiracle

"They are working tirelessly to raise funds for the clinical trial. They have the data, the proof and the opportunity to move forward but they need our help! We need your help!

"Donations could help make a life changing drug a reality. It has the potential to stop the progression of this awful condition. A chance for Freddie to fight back.

"Please donate what ever means you can, every penny counts. But if you are unable to donate, please share, its just as important. We need to get the word out, there is a potentially life changing treatment for Freddie and other children who are running out of time and it's being delayed due to funding!"

You can make a donation or spread the word about the appeal by visiting https://www.gofundme.com/f/kjkxu-help-save-freddie