Sheila: Unlocking the Treatment for PKU

by Anne Green

In 1951 a two year old infant Sheila Jones was diagnosed at Birmingham Children's Hospital (BCH) with a rare condition Phenylketonuria (PKU). There was no treatment but, not accepting this, her distraught mother Mary persevered until she found help from three pioneering doctors at Dr Horst Bickel, Dr John Gerrard and Dr Evelyn Hickmans. In the hospital laboratory they worked tirelessly to prepare a special formula and Sheila was the first person in the world to receive dietary treatment for PKU. Until now, little has been known about the life of Sheila, and her family in Birmingham, and the hardships and sacrifices they endured. It is a remarkable story of a brave little girl, her brothers, and her courageous and tenacious mother. Sheila's contribution is immense; it led to the introduction of newborn screening and worldwide treatment for PKU. It is a great sadness that Sheila herself was unable to benefit long term but her legacy is a triumph for all those with PKU. This is Sheila's story until her death in Birmingham in 1999 and will be important to people with PKU, their families, health professionals and readers interested in the history of medicine.

172 pages, Paperback

Published October 16, 2020

Reviews

[Sara Elisabet Kobbevik-Westgaard · Rating 5 out of 5]

As a mom of a two year old with PKU this book both broke my heart and healed it at the same time. It is devestating to read about Sheila and her journey, but I’m at the same time so grateful for her and her mother being the first trying dietary treatment for PKU. Thanks to them, and so many others I have a healthy, happy (and mischievous) little girl with so much character and humour 🩵