Help fund a clinical trial to save little Freddie!

Freddie was born May 2021, our perfect bundle of joy, baby no 2. He completed our little family.

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.

Nov 2023, Freddie was diagnosed with a rare, 1 in a million, degenerative condition called INAD.

Infantile Neuroaxonal Dystrophy.

We were told there was no cure, and life expectancy was 5-10 years old.

Our world fell apart.

During this time, 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. Over 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.

Today, Freddie has been stripped of all his motor skills, he can no longer sit, roll, crawl. Loosing his ability to swallow, a feeding tube has now been fitted. He is non verbal with very little understanding.

This condition is so cruel.

INADCURE foundation is a non profit charity organisation that have set up a movement called

#workingonamiracle

They are working tirelessly to raise funds for the clinical trial.

Your donation would help make this a reality, a life changing drug. It has the potential to stop the progression of this awful condition. A chance for Freddie to fight back.

They have the data, the proof and the opportunity to move forward but they need our help!! We need your help!!

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!

Thank you

Emily ( Freddie’s mum)