Life was originally pretty normal for the Beard family with the usual ups and downs. Pippa appeared to be a healthy, happy 19 year old – working hard at uni and having two part time jobs.
One morning after enjoying a party with her boyfriend and friends, Pippa woke in severe pain, not able to walk and could literally hardly move. After a visit to a neurologist (Dr Peter Silbert) she was placed immediately in Royal Perth hospital. Pippa had a four week stay with involved lots of rehab and physio after she was initially diagnosed with fibromyalgia and a form of chronic fatigue.
Six months later Pippa woke hysterically screaming asking us to turn on the lights, which were in fact already on. Pippa was temporarily blind. So began our journey of spending endless weeks and months in hospital being treated for epilepsy. Episodes so foreign and dangerous that she was placed on life support several times. It was only through the tireless and persistent efforts of Dr Silbert that he was able to confirm the diagnosis of MELAS (one of the several forms of mitochondrial conditions).
Back 13 years ago, it appeared that very little was known about MELAS and mitochondrial disease – to the point that the doctors didn’t realise that the nursing staff knew virtually nothing of these disorders. Only through our persistence and requests that the nursing staff needed better education about these disorders, did the communication start to evolve.
We learned from that moment that we needed to be informed, as well as our extended family and friends and most importantly any medical people involved in the journey. Pippa has had many episodes spent in RPH over these years and is still an ongoing outpatient. Pippa lives at home with us and has not been able to work or drive for 10 years and is very dependent on those close to her. We have been extremely fortunate to share so much with family and friends and they have made enormous differences to all our lives. At times life felt very lonely but, believe me, people can change the course of hope and believing in the strength of positive attitudes.
Knowledge can be frightening but it does empower questioning. As a family and with Pippa, we have been to visit Dr Carolyn Sue at the Royal Northshore hospital in Sydney. At the time Dr Sue lead the mitochondrial research in Australia. She is incredible in her hunger for statistical data and research. A young and inspiring woman that you want on your team. We have found that through Pippa we have spent so many hours in the company of Dr Phillipa Lamont and her wonderful team at RPH. We also call and rely on our long term and trusted naturopath, Gonzalo.
Pippa enhances her own life with her silent but astonishing attitude of the ultimate warrior. She makes such a difference to her own condition by maintaining a disciplined sleep routine. Evening 10pm to 7.30am, back to bed from 10am to 1pm and again from 5pm to 7pm. We believe, no we know, this is what is keeping Pippa in life – enjoying a restricted but quality of life that has now kept her away from hospitals for three years. Pippa’s body has suffered many of the MELAS symptoms. She maintains her love of life through family and friends, the strength of hope, in research, funding, education and awareness.