On the 20th Of November 2015 Bernadette and Luke welcomed their first child into the world - a beautiful healthy baby girl named Cleo. At only 4 months of age they experienced every parent's worst nightmare when gorgeous Cleo was diagnosed with a rare and cruel genetic condition called Spinal Muscular Atrophy type 1 (SMA type 1). Their worst fears were confirmed when they were told that Cleo would not see her first Birthday.
SMA Type 1 is a form of motor neurone disease with onset in infancy that is estimated to affect one in 10,000 babies. Roughly one in forty people carry the gene mutation, often unknowingly, and statistically two gene carrier parents have a one in four chance of having a baby impacted by this condition. Babies affected by this defective gene are unable to produce a critical protein to protect and keep their motor neurones alive. This results in the weakening of muscles not only for gross motor movement, but also those muscle groups that allow us to swallow and breath. SMA type 1 babies don't sit up, don't roll, don't usually eat orally (they are mostly tube fed) and often struggle with respiratory issues. Although sadly their body fails them, SMA type 1 does not impact their brain which develops completely normally.
Cleo's parents refused to give up in the face of the devastating news of her diagnosis and went about educating themselves on this condition. They learnt of a world first clinical trial using a unique gene therapy treatment that had shown promising signs towards an improved quality of life. They knew from their research that the earlier Cleo started on this new drug, greater the benefit. They moved mountains with their determination and managed to get Cleo into the trial by 5 months old - making Cleo one of the youngest babies on the trial.
Thanks to her dedicated parents and the unique gene therapy treatment, Cleo is now 20 months old and defying all the odds.
Cleo has made a number of milestones that were never expected. She can sit, she can hold her head up, she can grab things and she can make some movements with her legs lying down and recently even started to stand with support. Cleo is the happiest, most adorable baby you can imagine. She loves pink, she loves balloons, she loves Finding Dory and she loves her food! With her beautiful sparkling blue eyes she is just the most spirited little girl you will ever meet.
Cleo's progress is remarkable, but has come with a significant financial impact. Bernadette is now a full time carer for Cleo, however, the ongoing costs of rehabilitation and equipment required to ensure the best quality of life for Cleo are significant and unsustainable for the family. Next month Cleo is booked to go to a leading rehabilitation program in Sydney at the NAPA centre (napacentre.com.au). This program working one on one with Cleo to improve her strength comes at a price - $20,000.
Cleo's illness is still regarded as terminal and although the new therapy has afforded her a much better quality of life, and a longer life, Bernadette and Luke live with the knowledge that every day with Cleo is precious.
Bernadette and Luke really need some additional support and I am pleased to be campaigning on their behalf. I know collectively we can make a real difference in their lives. Your generosity is greatly appreciated by this special family.
- Renee Dixon
- Tara Jam
- Jane Sullivan
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