This story was written at the time of Lilly's diagnosis and christening. Sadly Lilly passed away on the 5th March 2009. She was only six and a half months old.
CLICK
HERE FOR THE AUSTRALIAN PETITION TO FIND A CURE FOR SMA
Lilly’s Story
Lilly Robyn Conlan was
born on the 20th August 2008 at 6:22am at
She is perfect.
Our long awaited and much loved baby girl. It didn’t take long for her
personality to shine through, her eyes light up and her smile beams from ear to
ear whenever someone comes to say hello.
She loves going for walks in the pram, looking at her mobile and loves
bath time. Lilly always has so much to say, even if it isn't with her coo's and gaa's it is with those
beautiful eyes of hers.
We noticed that when Lilly was 4 weeks old she was
very "floppy" and wasn't able to hold her head up. We started to investigate
the reasons for this and arrived at the final diagnosis of Werdnig
Hoffman Syndrome.
This devastating condition is a recessively inherited
genetic condition that causes a gene to be missing - the SMN1 gene. The effects of this missing gene will cause
Lilly’s muscles to degenerate and eventually impair breathing and swallowing.
Babies with this condition usually don’t live more
than 12 months. The specialists at the Royal Children’s Hospital have told us
that Lilly will only live a few months. They
have told us there is no effective treatment and no known cure anywhere in the
world.
With the help of Robyn and the love and support of
our family and friends we are doing everything possible to keep our Lilly
longer and maintain her health as long as we can. We are pursuing many alternative therapies
and believe that we are making progress already, with her movements improving
daily and her strength increasing.
We ask you all to join us in staying positive and
keeping Lilly in your prayers.
MATTHEW AND STELLA.
WHAT HAPPENED NEXT
Stella taught Lilly what team to barrack for -
Matt taught her to read !!!
Then she learnt how to laugh
Water Baby
Summer Holidays – Surviving the Heat!
Then there was Christmas
She loved her bean bag for Christmas!
New Years Eve – She is growing into such a big girl.
With Nanny & Grandpa on New Years Eve.
Having fun with Mum & Dad
She loves her music, toys & videos
The everywhere girl…..The Zoo……
The Aquarium…
At the fireworks on
AND NOW SHE IS SIX MONTHS OLD - HERE IS THE PARTY!!!
It is hard to believe that Lilly has an incurable
genetic disorder. We can’t sit back and
do nothing about this condition. One of
the things that we believe we can do is support medical research into a cure
and a public awareness campaign.
Please help us to save Lilly and other children like
her – CLICK ON THE PETITION BUTTON ABOVE and together we can ask the Australian
Government to start funding research into this devastating, heart breaking
disorder.
We have started the Lilly Robyn Foundation. We
intend to raise money for research which will be directly passed on to Research
Organisations or projects such as the one detailed below. 100% of any
money raised will go to these organisations or research facilities. All
costs will be funded by the Conlan and
To donate contact Robyn Bell robynbel@bigpond.net.au
or Stella Conlan at mattconlan@optusnet.com.au
Research is being conducted by Professor Steve Wilton
of the
The main focus of their lab is to use genetic bandaids to change gene expression to reduce the severity
of Duchenne muscular dystrophy. They hope this will modify some of the
disease causing gene message.
SMA is caused by the loss of the SMN1 gene, this is
the survival motor neuron gene.
What Professor Wilton is trying to do with SMA is to
use the same principal of genetic bandaids and change the gene expression of the SMN2
gene.
There is a very similar gene on the same chromosome (SMN2) but this one does
not work properly. It is thought that the milder versions of SMA types II and
III are due to extra copies of SMN2.
Their SMA research work that Professor Wilton and his team would look at would
be trying combinations of “bandaids” to see if they
work better, evaluating different bandaid
chemistries, and looking at other mechanisms to promote the function of the
gene.
It is indeed exciting that this work is being
undertaken here in
Steve and his team are working under very stressful financial conditions with
funding only coming from donations, and some physical support from the
If you are on facebook
please see the Saving Lilly and Friends for more information.