Wearside documentary makers produce powerful film on rare diseases

John Lee Taggart praised his crew who kept going with a new film shot between Sunderland and Newcastle, even though they were shaken by the troubles across the UK.

John was part of a team shooting a short story called Hadid And I.

‘We were not blind to what was happening’

He teamed up with cinematographer Craig Crouchman, filmmaker Paul Stainthorpe 'and a small North East team' to develop the short film which he hopes will raise further awareness and hopefully stoke more interest in developing the story in full. Other members of the outfit included Hamzeh Al Hussien and supporting actor Manuel Dera.

John said: “We were not blind to what was happening across our region.

“Hamzeh had vocalised how shaken he was by it all and one of our supporting actors Manuel Dera almost pulled out due to completely justified concerns.

‘A shining example’ of working together

“This project was planned months before any of this had begun, but I hope it serves as a shining example of what can happen when we all work together and create as one.”

John said he was ‘very proud of the cast and crew involved on this, and the sky is now the limit.”

Filmed in Sunderland and Newcastle

Hadid and I was filmed at the Museum Vaults in Sunderland and at Peachplant Productions HQ in Newcastle. It explores the story of a bereaved husband (Jacob Anderton) who has tragically lost his wife to a disease called Niemann-Pick type C and is struggling to navigate daily life.

Spreading awareness of rare diseases

Niemann-Pick is a group of disorders in which abnormal amounts of fatty materials build up in the brain, spleen, liver, lungs, and bone marrow. The film shows a group meeting with a counsellor (played by John ) and when it doesn't help, the words of a stranger (Hamzeh Al Hussien) spark a new perspective on life.

A challenge based on personal experience

John is Head of Communications for the Washington based small rare disease charity, Niemann-Pick UK (NPUK).

His aim is to 'look even deeper' into rare genetic diseases in children using the power of film.

He and his partner Chantelle have faced up to it themselves with their daughter Cora Lily, now 19 months.

‘We are still monitoring the situation’

He said he and his partner Chantelle Taggart were attending Cora's scans towards the end of the pregnancy when a problem emerged.

'The person doing the scans was saying 'oh dear' and there seemed to be an irregularity."

He said: "We had some potential serious issues (heart defect) picked up in early screening late in pregnancy, and then a few tests once Cora was here.

"All seemed to  correct itself but we are still monitoring the situation.”

How to find out more and help

John hopes Hadid and I will raise awareness and will kickstart his £75,000 fundraising drive to produce a 90-minute film called A Rare Life.  To find out more about the latest project, visit the Go Fund Me page.