Pauline and Harry Jones live in Lilydale where Harry practiced pharmacy for fifty years. Harry was a founding member of Chemway/Chemmart and a board member through the 80's; he is also a much admired and popular member of our chemists' golf association.
In 1963 Pauline and Harry Jones' daughter was born with hypsarrhythmia.
What is hypsarrhythmia?
Hypsarrhythmia [hips-a-rith-me-ya] is a disorganized, chaotic pattern of brain waves that occurs in children with infantile spasms (IS) but not in other seizure disorders.
Unlike spasms, this is not a symptom that you can see.
It can only be detected by a noninvasive, painless test called an electroencephalogram (EEG). Their daughter Susan had on average seven major convulsions with screaming every day.
Susan required 24 hour attention, never sat up and, sadly, never recognised Pauline and Harry.
Pauline and a friend (also with a disabled child), knowing how difficult it was, decided to do something about it.
They placed a tiny advertisement in the local paper inviting other mothers in the same situation to join a support group.
They were staggered when twenty mothers and their children descended on Pauline and Harry's house.
They could not believe the need in the outer eastern area of Melbourne.
The Beginning of Melba
They started a day care centre where the children could stay while their mothers could have a bit of respite to do things for themselves.
Qualified people, volunteers, business people all chipped in as their group grew and eventually the Lilydale Council got in on the act.
In 1971 a formal committee was convened – Harry Jones was elected President and held that position for 13 years.
Much hard work and money has seen Melba grow and change dramatically over almost 50 years. It will change even more with the National Disability Scheme with the existing services continuing and requiring financial support.
Melba now turns over $15 million and is a substantial operation incorporated under the Hospitals and Charities Act.
Pauline Jones was awarded an OAM for her contribution in support of the disabled.
Susan, Harry and Pauline's daughter, died aged 13.
