Jake's Story

Who is Jake?
Tony and Lisa Flint’s son Jake, now 20, suffers with one of the World’s Ultra-RARE and complex brain diseases; Aromatic Amino Acid Decarboxylase (AADCd) deficiency. Their personal and extensive experience with the disease and at the time, severe lack of global support and research, inspired them in 2006 to found The AADC Research Trust.
The AADC Trust was formed with the help of Co-Directors Jacqui and Brian Jefferies, Medical and Scientific Director, Professor Simon Heales and of course with the support of family, friends and supporters.
Jake's oculogyric crisis without dystonic attacks 
Children with AADC deficiency suffer multiple and profound disabilites.  Almost all suffer with oculogyric crisis and in varying degrees.  The worst attacks are suffered by severely affected AADCd children who can experience their oculogyric crisis with a dystonic attack which causes body stiffness and arching of the spine, this can last up to 8 hours and occur every 3 days.

This is Jake Flint & his families story......

The AADC Research Trust was founded in 2006 and it had a very specific purpose...

To globally disseminate as much medical and scientific information and improve disease awareness about 'Aromatic Amino Acid Decarboxylase (AADC) deficiency'.

To raise 1,000's of pounds to fund AADCd medical and scientific research through sponsorships, organised events and its charity shop, eBear's Attic.

To comfort and support newly diagnosed AADCd families, as well as continuing to assist families previously diagnosed, whom we have come to love and respect over the years.

Since our inception, the discovery of over 130 children Worldwide, spanning more than 30 countries leads us to ask ourselves "exactly how rare can this condition be when any child, from any culture or any country can be affected?

BBC Critical Conditions

Jake's Story

quick links

stay in touch

find us

  • Grey LinkedIn Icon
  • Grey Facebook Icon
  • Grey Twitter Icon
  • Grey YouTube Icon
  • Grey Instagram Icon


To contact us please email via: enquiries@aadcresearch.org and we will endeavour to reply to you as soon as possible. We apologise in advance for any delays in our response, during this time. Our staff are on furlough and working from home. Please bear with us. Thank you for your patience.


The AADC Research Trust

Soper Hall, 2 Harestone Valley Road,

Caterham, Surrey, CR3 6HY

Registered Charity

UK & Wales No: 1114367

© AADC Research Trust