About Us
MEET OUR COMMITTEE
Leticia Grant
I'm married to Kel and mother to Allara aged 11 who has Angelman Syndrome, and Alexandra aged 9. I became a mum at age 40 after a varied career & currently in the Recruitment industry.
Despite 5 years of searching for an answer to her development delays, when Allara was 6, her Pediatrician observed her excited hand-flapping and suggested it could be Angelman syndrome. Many weeks, and 2 more tests later we had the answer; AS (UPD).
The internet & networking lead us to the happy meeting with other families in Perth who had children with the same diagnosis. After a few ‘playdates’ we started our own WA Incorporated association, then attended our first Australian ASA conference in Queensland in 2007. I have been on the committee of both State and National associations ever since, currently as WA President
Seeing so many similar kids makes obvious
the benefits of shared-support groups and
the emotional and
educational succor of associating with others who are ‘treading the same path’,
with the advantage of learning from the history of others and the fulfillment of
mentoring those with less experience. Allara has taught us to accept and
appreciate what we can’t change, and to fight and advocate for what we can!
Sue Meredith
I am married to Andrew and have two children,
Alexander (22) who whilst never officially been diagnosed with A.S., has all
the symptoms and behaviours and Sarah (19) who is a Uni student.
Having spent the first 16 years with Alexander in the Northern Territory, coming to WA was like winning lotto. I now have family support and access to so much more than was ever available in the NT. Whilst working part time to coincide with Alexander’s respite hours , this still allows me to pursue other interests including being on the Board at VIP, reading, gardening and exploring this great state. I am currently the ASA WA State secretary and have been on the WA committee since 2009.
Alexander has shown our family the true meaning of tolerance, patience and at times frustration over the years. I do like the phrase ‘special kids pick their special parents’!
I am married (to Chris) and I have four children
ranging in age from 27 to 40, one granddaughter and one on the way. Chandra, now 31 was diagnosed with Angelman
syndrome when she was three. At that
time she was the first in Western Australia to be diagnosed. I worked in the medical field in the
pre-children years and in the disability field from the time Chandra was 9. Chandra is a deletion positive angel and
had me running from the moment she was born to when she moved into a group home
with IDentity at age 18. Chandra was
schooled at Gladys Newton School and now attends VIP as a post-school
option. She is very settled in her home
and day placement and comes home to us every Saturday.
Chandra accessed respite regularly during her school
years I am a great advocate for respite
as it enables the family to have quality time together. Chandra is very lovable, very happy and a
wicked wicked girl (she’s naughty in the nicest way,). She has spirit and effervescence and we love
her unreservedly.
I attended the first National Angelman Syndrome Conference in 1993 and since that time have been a member of the National committee. I am currently President of Angelman Syndrome Association of Australia and Treasurer of Angelman Syndrome Association of Western Australia.
Bethlyn Jarvis
I am a retired nurse and the foster mother of a 28 year old son with Angelman Syndrome who now lives in a group home.
For 20 years my husband & family of 3 children dealt with the challenges of living with a person with A.S. Jonathon’s behaviour, our lack of respite and the general non-acceptance in the community, isolated our family in many ways. Therefore with my experience, I am endeavouring to do what I can to assist ASA families to be supported in practical ways and to receive adequate respite. I have been on the WA committee since 2007, currently as Vice President.
Fiona Dunn
I am married to Brad and Mum to four boys, Joel (9 yrs), Harrison (7 yrs) who has Angelman Syndrome, Lachlan (5 yrs) and Campbell (4 mths). I am a stay at home Mum due to the demands of living with a child with a disability and the numerous doctors appointments that are now part of our lives. So we decided to run a business from home, so I could work my own hours and also be available to attend appointments and activities for all my children.
Harrison was diagnosed at 14 months old and is del+. He attends school at Carson Street Independent School in Victoria Park which is part of the Conductive Education Program. This is a 30km trip from our home in the Northern Suburbs but there is now a plan to move to Burbridge School, Koondoola in 2012. We believe that Harrison’s development has benefited greatly from CE.
I have been part of the ASAWA committee since the association began in 2007 and have found the support and friendships we have made to be very beneficial to our family.
Having Harrison and his happy nature in our lives has made us appreciate what is important in life.
Dianne
Bawden
I am happily married to Neil and mum of two - Jodi (29yrs- Teacher) and our son with A.S, Cale (24yrs).
Cale resides in a DSC group home, sharing with 3 other young men of similar age. The move away from the family home, at 22yrs of age, was a very emotional experience for all of us, but a necessary one.
Our journey through life with Cale has seen lots of highs and joys of celebrating even the most small steps in his life. Cale has taught us 'Patience', 'Tolerance', and how to accept the longest/biggest hugs given in the world.
I am semi-retired and love living near the beach; walking; cooking/entertaining; gardening; golf (still on "L" plates) and volunteer work. I have been on the WA committee since 2007.
The frustrations of living with A/S are many but the end reward of that big happy smile and a reassuring cuddle makes it all seem worthwhile!
Jaquie Mills
I'm
Jaquie Mills and my partner Darryl and I are parents to Eli, who is 21 years
old and has UBE 3A, and also to four other young people. Eli has been living
independently from us with three of his friends for the past two years, and is
enjoying a happy and full life. He loves trains, cake, music and dismantling
computers.
I'm very interested in how families with children with disabilities can be
supported better and this is reflected in my choices of work. I'm Chair and
Developer of Vela Microboards Australia, Chair of the Positive Behaviours
Guiding Committee hosted by DSC, and teach Inclusive Education at ECU. I'm
particularly interested in the potential for families to connect with and
support each other, and to have a stronger voice in designing the systems which
support us. I love hearing from other families who have children with AS and I have been on the WA
committee since 2007.
Kellie Wild
I’m a 35 year old, single mum to my gorgeous 7 year old angel, Katie (deletion +) Katie is a typical happy angel who loves water based activities, horse riding, watching DVD’s and also loves visiting her grandparents’ farm. She also shares my love of camping and travelling. Katie received early intervention through DSC and at the age of 2 ½ she started in the Conductive Education program based at Carson Street School where she is now in Year 2. Katie walks independently, can feed herself and uses a bright pink Dynavox to communicate.
I was fortunate to meet several Angelman families with children of similar age soon after receiving Katie’s diagnosis and this early support helped me through the difficult and emotional days. Soon after the Angelman Syndrome Association of WA was formed and I have been actively involved since its inaugural year. I wish for all Angelman families to benefit from this amazingly supportive, friendly, motivated and dedicated association. I love being able to share knowledge and advice, chat about the good times and the bad with the people who understand what it is to be an “Angelmum”.
Danneal Jez
I am the mother of Aralie, 2 who was diagnosed with Angelman Syndrome officially on Christmas Eve when she was 13mths. Aralie is deletion positive and I was concerned from the age of around four months that things weren’t right.
I am married to Shane and we also have a son who is 4. Before children I was an early childhood teacher and soon after our first child we started our own Commercial building company. Since Aralie was born we have been busy with many appointments investigating hearing, vision and of course sleep issues. She began therapy around 8 months but the biggest difference was when she began epilepsy medication in the Nov before diagnosis. We have therapy fortnightly and also attend the parent-child conductive education class at Carson St which we have found amazing.
We feel very blessed to have been given our gorgeous Aralie, who keeps amazing us with her determination, strength and smiles. We know there are more challenging times ahead and are very grateful of the support of others in the Angelman Association of WA
