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- Bartholomew Anthony
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1 Kerry 50 Lismore, Kerry suffers with peripheral neuropathy. She has three children. Bodenham One child has been diagnosed with Complex 4 Deficiency, one child is autistic and suffers with heart defects and one child has gastro-intestinal issues. Karen Crawley Susan Fedoryschyn John Goodwin 48 South Sydney, Teenage daughter diagnosed with MELAS. Suffered her first stroke at age eight. Suffers with dementia, sight and hearing issues, digestive issues. Kerry.bodenham@bigpond.c om If phone unanswered, please leave a message Limited availabilities on Tuesdays. 65 Sydney, Diagnosed with mitochondrial myopathy five years ago. suefed7@optusnet.com.au 64 Goulburn, Diagnosed with LHON in Severe loss of central vision with peripheral vision not affected. Also suffers from fatigue, severe migraines and sensitivity to light and sound. LHON has also affected John s mother, uncle and brother. Pam Hausler 67 North-west Sydney, Ashleigh Hill 25 Sydney Northern Beaches, Diagnosed with MELAS. Dealing with symptoms such as muscle cramps/weakness, migraine headaches and gut and bowel problems. Pam has lost both her mother and daughter to MELAS. Diagnosed carrier of LHON, which took the eyesight of her brother at 20 and Grandmother. Possible LHON Plus link (strokes in family). Received genetic counseling in 2014 for family planning. See Ashleigh s story here. Craig Lee 53 Albury, Diagnosed with mitochondrial myopathy ten years ago. Suffers with decreased energy, especially in the legs and feet. Also suffers with balance issues. Yasmin 47 Auburn, Fourteen year old daughter diagnosed with Leigh Syndrome. She Mizrak suffers with difficulties in swallowing, but is otherwise quite well. Lisa Moult 49 Pyrmont, Mito patient diagnosed with atypical KSS. Symptoms started in 2004, diagnosed after six years in Looking to connect with other patients and carers. Patrick Moult 54 Pyrmont, Carer for his wife, Lisa. Happy to share experiences with both carers and patients Sean Murray 43 Inner Sydney, Family history of MELAS lost his brother in 2006 (aged 45) and mother in 2008 (aged 70). Other family members also affected. john.robyn@bigpond.com pamhausler@gmail.com ashleigh.hill.work@gmail.co m yasmin.mizrak@hotmail.com mito@moults.com mito@moults.com Available during the day on weekends; between 2pm 5pm on weekdays. Please call after 3pm
2 Melissa Targett Amanda 37 Moreton Bay, Harmon 27 Tamworth, Diagnosed with POLG mutation at 25. Suffers with vertigo, ataxia and frequent falls, among other symptoms. Julie Maguire 66 Sunshine Coast, Annie Midgley Aimee Morton Dawn Richards Diagnosed with KSS after eight years of tests and procedures. Suffers with chronic progressive external opthalmoplegia (CPEO) and fatigue. Diagnosed four years ago with mitochondrial myopathy. Suffers with fatigue, leg weakness, croaky voice. Has been through three operations to repair eyesight. 62 Petrie, Diagnosed with mitochondrial cytopathy after many years of looking for a diagnosis. Annie suffers with chronic pain and fatigue; as well as poor vision, diabetes, early stage kidney disease, sleep disorders and difficulty in swallowing. 20 Brisbane, As of Sept 2015 has 20% hearing and relies on lip-reading. Also has damage to the optic nerve. Has issues with speech. Suffers with weak muscles and has days where walking is impossible. Suffers with lack of energy and difficulties in sleeping. Mother and maternal grandfather also diagnosed with mito. 69 Gold Coast, Daughter has suspected Mito, based on the marker 3Methylglutaconic acid urea. She has been tested for 13 years and has symptoms of extreme fatigue, confusion, anxiety, intellectual disability, odema in her legs, episodes of mental illness-like behaviour (delusions, hallucinations) and episodes of dementia-like behaviour (but no significant change in the brain MRI). Desperate to get a diagnosis so that she can plan for our daughter s future. mitza_6@hotmail.com amandaharmon73@bigpond. com jkmag9@bigpond.com amidgley@internode.on.net aimee.d.m@hotmail.com dawn@ssms.com.au SMS only
3 Tony 69 Gold Coast, Richards Donna Strain North-west Brisbane, Tracy Taprell 42 City of Logan, Darren Hughes Daughter has suspected Mito, based on the marker 3Methylglutaconic acid urea. She has been tested for 13 years and has symptoms of extreme fatigue, confusion, anxiety, intellectual disability, odema in her legs, episodes of mental illness-like behaviour (delusions, hallucinations) and episodes of dementia-like behaviour (but no significant change in the brain MRI). Desperate to get a diagnosis so that he can plan for our daughter s future. Teenage son diagnosed with Barth s Syndrome. Tracy lost her son Dion at three years of age from Leigh's Syndrome, seven years ago. Tracy has been involved with the AMDF and providing support to the mito community for many years, and is comfortable talking about Dion and mitochondrial disease. You can read the Taprells story here. 50 Atherton, Darren was diagnosed with mitochondrial myopathy in Darren has received little information about mito since his diagnosis. He is very happy to be contacted by people in the mito community to share his experiences. VIC Laura Atwell 28 Melbourne, VIC Young daughter Ivy in the process of being diagnosed with Leigh s Syndrome. Ivy suffers with seizures, hearing loss, and significant developmental delay including no neck control. Nadja Edwards 34 Melbourne, VIC No proper diagnosis for Nadja s son yet. Hoping to get exome sequencing done in the next month. Currently seeing the metabolic clinic and neurology departments at the Royal Childrens Hospital. Alice Gibson 27 Flemington, VIC Alice was diagnosed with COX negative deficiency in July She is currently still going through the diagnostic pathway. SA dawn@ssms.com.au donnapepworth@hotmail.co m ttaprell@yahoo.com.au dazdani@iprimus.com.au lauratucker88@gmail.com yay.nada@gmail.com alicemaygibson@gmail.com Tracy can also be contacted via private message on Facebook- she is a member of the AMDF Facebook group.
4 Mia Bell 38 Adelaide, SA Diagnosed in the UK in 2003 with mitochondrial myopathy A>G. Vicki Hardie 67 Adelaide, SA Carer for an adult mito patient who was diagnosed later in life WA Don Beard Perth, WA Daughter was diagnosed with MELAS at age 19. She is now 38. Suffers with cognitive loss, hearing loss, muscle weakness, diabetes, gut and bowel issues, fatigue and epilepsy. Don and his wife are long-term carers. Jane Cleary 46 Inner Northern Lost her son at seven months old. See Archer s story here. Perth, WA Lesley Spence TAS James Crawford Rene Raichert 50 Northern Suburbs, Perth, WA Lesley has a son Jason, 23, who has been diagnosed with NARP. He suffers with weak legs and uses a frame or wheelchair to get around. He also suffers with sleep apnoea, heart rhythm irregularities and weight issues. donbeard52@hotmail.com jane.cleary@iinet.net.au lesley.66@iinet.net.au 50 Franklin, TAS Diagnosed with LHON. Lost central vision at age eight. jagc@bigpond.net.au Hobart, rene.raichert@hotmail.com Tasmania Son diagnosed with Leigh Disease at nine months and passed away at 19 months of age (2014). Cognitive impairment, motor delays, severe Lactic acidosis Tracy Pullin 45 Diagnosed with MELAS in Suffers with censorial deafness and wears bilateral hearing aids. Daughter also carries the same genetic mutation. Brian Russell Kris Russell Rural Southland, Rural Southland, Twelve year old daughter diagnosed with KSS one year ago. Twelve year old daughter diagnosed with KSS one year ago. bandtpullin@gmail.com deerpark@farmside.co.nz deerpark@farmside.co.nz If phone unanswered, please leave a message. Please call before 6pm is best way to contact due to problems with hearing, however phone can be used on weekends. Available evenings Available evenings
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SUPPORT NETWORK CONTACT LIST
PEOPLE WITH MITO Kerry 50 Lismore, Kerry suffers with peripheral neuropathy. She has three children. One Bodenham child has been diagnosed with Complex 4 Deficiency, one child is autistic and suffers with
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