Sunderland dad reveals amazing video after baby daughter's health scare

The baby daughter of a Sunderland dad has starred in an amazing video to raise awareness of child health scares.

John Lee Taggart's daughter Cora Lily, now nine months, features in the comedy production which is all about new-born screening and rare diseases.

It aims to raise awareness of the new-born blood spot test, and the low number of conditions currently tested for in the UK.

The film called A Rare Find has been produced by a collaboration of Washington-based charity, Niemann-Pick UK (NPUK), The Newborn Screening Collaborative, and local production company Media Borne.

By complete coincidence, the charity that John works for looks in to rare diseases.

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.

'It was a very worrying time'

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

"Either way it was a very worrying time, and gave us a deep understanding of the emotional toll parents go through with this sort of thing." John is Head of Communications for the Washington based small rare disease charity, Niemann-Pick UK (NPUK).

It's a diagnostic odyssey

The video is narrated by Peep Show’s Robert Webb, and stars Jack Robertson, Chantelle Taggart from South Shields, and 'our baby girl Cora Lily', said John who is the writer and director.

He said: "Because it involves Robert, and because we didn't want to freak parents out, we made it a bit lighter."

"NPUK is one of the member groups of The Newborn Screening Collaborative and hope at some point their group of conditions (Niemann-Pick Diseases) could be added to the UK newborn screening programme."

How to find out more

The group aims to do that 'simply so families do not have to go through this “diagnostic odyssey” as they call it' said John.

That way, they can 'know early on and can therefore intervene early on too'.

Niemann-Pick diseases can affect both children and adults:

They are caused by a lack of the enzyme acid sphingomyelinase and they lead to a build-up of toxic materials in the body. 

Further documentary videos - which will be more hard-hitting - will be released by the collaboration in the new year.

To find out more about the diseases, visit https://www.npuk.org/