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News and Events
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A Boy named Luke
Many times, as we Lions, Lioness and Leos
work with ALCMF we meet some wonderful and
extraordinary families. The Lions Clubs of
Hurstville St George, Lugarno and Oatley
combined to purchase a Hart Walker and
ongoings for a child – a total of $11,620.
Through that donation the Lions’ lives
have been enriched - they met Luke and his
family. Carole Powell -Trustee
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The following has been written by Luke’s
Mother.
Luke’s Medical Condition
- Immediately after Luke was born he began
having ‘medical emergencies’ and was taken
by ambulance a number of times. At 9 months
Luke began having severe, unrelenting
epileptic seizures. He was given an MRI
which revealed that some of the grey matter
in Luke’s brain was in the wrong spot. His
condition was given the name, Neuronal
Migration Disorder, as 3 or 4 neurons had
not migrated from the centre of Luke’s brain
to the outer rim like the other tens of
thousands had done. This had occurred at 20
weeks in utero and although it was
genetically caused it is not a hereditary
condition. Apparently there is a tip of one
or a few of Luke’s genes missing (they’re
still looking for them!) that did not
transfer correctly at conception and
therefore didn’t trigger the migration
fully. It is very rare, but could happen to
anyone at any time. It is not a syndrome
and we have just as much chance of having
another child with the condition as anyone
else.
The Neuronal Migration Disorder has resulted
in severe epilepsy which has proved somewhat
drug-resistant. Although Luke’s seizures are
controlled throughout the day, Luke
continues to suffer with sleep-induced
seizures and still sleeps with me as he
wakes several times throughout the night.
Luke also has ‘Severe Global Developmental
Delay’, meaning that he is both
intellectually and physically delayed, and
has weak muscle tone which affects his
eating and digestion. He cannot crawl, stand
or walk unaided and he uses hand signs and a
few basic words to communicate.
Unfortunately, and unrelated to his brain
abnormality, he also is allergic to milk and
egg and has a life-threatening reaction if
exposed to these. Recently we discovered
that Luke has developed a toxic skin rash if
exposed to the sun due to one of his
epilepsy medications.
Having talked about all of Luke’s medical
problems, and despite the fact that looking
after him is more than a full time job, I
must say that Luke is a blessing to our
family. As any parent would, I wish I could
take away all of the pain and suffering he
goes through, but like many children who
suffer and struggle with medical conditions,
they develop a beautiful heart and learn
very early what is important in life and
teach it to the rest of us!
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Letter written to the Clubs after the Hart
Walker fitting
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Dear Noel,
I just wanted to write to you and thank you
for your efforts in getting our little boy,
Luke, his Hart Walker. Already Luke has
taken a few steps on his own and walked
himself towards a toy, so progress
already…Yippee!! I have included a photo of
Luke in the Walker at home where he is a
much happier little chappy than you
witnessed last week at the Spastic Centre.
As you saw last Friday, Luke is a determined
little character with a strong personality
and this will serve him well in his
determination to walk. I had a feeling that
Luke would adjust quickly to the walker and
it seems to be the case. It has come not a
moment too soon, I must say. We had hit a
brick wall with his development and learning
because Luke has wanted to walk so much that
he would refuse to do anything else. If you
saw him writhe and kick to get away from the
books I tried to read him you would laugh at
his tenacity and stubbornness! He would not
participate in any kind of sedate activity I
tried with him; painting, stamping, gluing
etc. Like most little 3 ½ year old boys all
he wanted to do was run around and explore
the world. Well, now he’s on his way,
thanks to you, and he is loving it – on his
own terms, of course!!
I cannot tell you how much we appreciate
what you, your colleagues and the Spastic
Centre have done for us and for Luke, in
particular. It has given Luke a whole new
lease on life, and us as well, as his
family. The Walker itself is an excellent
machine which enables him complete
independence but still challenges him at the
same time. I am thrilled with it after
trying for so long to hold him up in a
back-breaking effort to try to give him the
experience and enjoyment of being upright
like everyone else. You are truly marvellous
people doing great work and we feel very
blessed to have benefited from your efforts
in such a huge way. Please remember us if
you need anything at all as we would be more
than happy to help in any way we can.
I will keep in touch and let you know how
Luke progresses.
Thank you again and God
bless you.
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Lions Club of Lugarno makes Hansard!
On 28 February 2008 Mr Kevin Greene,
Minister for Community Services, made a
Private Members Statement in the NSW
Parliament.
MR KEVIN GREEN (Oatley – Minister for
Community Services) [4.23pm]: As many
members recognise, we have the opportunity
to be involved with a large number of
community groups within our electorates.
For the past two years I have had the
pleasure of assisting Lugarno Lions Club in
organising a St George sports stars
breakfast with the funds raised being used
to assist projects of the Lions club. Last
Friday I attended that function at the home
of sport within the Hurstville community,
Hurstville Oval. Fortunately, this year
eight international sports stars hosted
tables for local business groups and others
who supported this fundraiser. The Lugarno
Lions Club will use the money to buy Hart
Walkers. The Hart Walker program is
significant for Lions clubs. The eight
international sports stars who joined us
were rugby league immortals, Graeme
Langlands and Johnny Raper, Olympic cyclists
Gary Sutton and Kevin Nichols, Australian
cricketers Brian Booth and Murray Bennett,
renowned international former world record
holder athlete Albie Thomas and Wayne Riley
who is recognised throughout the world not
only as an athlete but as an outstanding
golf commentator.
This great morning raised between $13,000
and $14,000 to support the Lions’ Hart
Walker program. As the master of
ceremonies, I interviewed two of the guests,
Johnny Raper and Brian Booth. They
certainly entertained the 100 or so gathered
at the function with their stories and
comments on current sporting trends both in
rugby league and cricket. Well-known
comedian Paul Martel generously gave of his
time and also entertained us with his quick
wit and stories. As I said in my
introduction that morning, Paul is one of
the best comedians not just in Australia but
in the world. I also thank generous chefs
Leo and Merren Rulishauser, who run
Stapletons Restaurant, Sutherland who also
gave freely of their time. I also thank
Greg Lazarus and the Sydney Markets Lions
Club for providing produce.
The organising committee of the Lugarno
Lions Club chaired jointly by Bruce Martin
and Alan Peters, current president, Ivan
McKay and members, Dick Goodfellow, Noel
Burchmore, Brian Anson and Keith Miller
would agree with me that one of the great
benefits in organising this function is the
involvement of well-known local businessman
and great supporter of community events,
Phill Bates. Again this year Phill provided
his expertise and assisted in the successful
function that raised close to $14,000. I
also thank the generous business people who
support the event not only by buying a
ticket but by the raffle and the small
number of auction items that made the day
such a great success. I also thank
Hurstville Council for the use of Hurstville
Oval and St George District Cricket Club for
the use of the Booth Saunders Pavillion,
which stands so proudly at Hurstville oval.
I take this opportunity to plug the trivia
night to be held by Lugarno Lions Club
tomorrow night at Penshurst RSL in support
of Mortdale Community Services, which I will
be attending together with other friends. I
also plug Oatley Lions Club annual jazz in
the park at Oatley on Sunday 9 March.
MR BARRY COLLIER
(Miranda – Parliamentary Secretary)
[4.27pm]: I thank the Minister for
Community Services for drawing the attention
of the House to the wonderful work of the
Lugarno Lions Club. The Minister is
well-known for his community involvement in
service and sporting clubs in his
electorate, and the Lions Club of Lugarno is
no exception. I congratulate the club on
raising $13,000 to $14,000 for the Hart
Walker program. That is a wonderful example
of how volunteers and our service clubs are
making a difference to the community. I
congratulate the Lugarno Lions Club. I hope
its future functions, as advertised by the
Minister are successful.
The Foundation would also like to
acknowledge the wonderful contribution of
those people mentioned in the Hansard
Report. The children and families who will
benefit are indeed fortunate that we have
such great Members and supporters in the
Community. Carole Powell - Trustee
