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Sonya & Bailey

When Sonya was first told her newborn daughter, Bailey, had been born with a neuromuscular condition, she didn’t think of the vast amounts of support their family would require. After spending the past fourteen years as part of the MDNSW community – attending programs and meeting other people living with neuromuscular conditions - Sonya and Bailey have found their lives filled with laughter, education and most importantly, support.  

At MDNSW, we make it our mission to help families like Sonya’s to feel supported and live the life that they choose. Make an impact and donate today.

The first three months of Bailey’s life were spent in Westmead Children’s Hospital. An initial muscle biopsy indicated that Bailey had been born with multiminicore disease - a disease that primarily affects the skeletal muscles used for movement.  

Now, fourteen years later and after many tests and varied symptoms, Bailey is still yet to receive a formal diagnosis. “Bailey's life revolves around therapies; physiotherapy & hydrotherapy, to keep her as healthy as can be,” mother Sonya shared with us, “she has had two major operations on her back to attempt to strengthen.” 

During Bailey’s initial stay at Westmead Children’s Hospital in 2010, a social worker suggested Muscular Dystrophy NSW to the family. “Initially I didn't think I needed a support network,” Sonya admitted, “then as time went by, I realised our family needed support, guidance and understanding from like-minded individuals and reached out to join MDNSW.” 

Since joining the MDNSW community Bailey has attended four summer camps. It was here at these camps where she was introduced to powerchair football – something which was a massive highlight for Bailey. She’s even since joined the NSW Powerchair Football Association’s Skill Acquisition Program to further her skills and meet other players.   

It’s not only Bailey who has been able to benefit from the MDNSW programs and events. Sonya herself has gone away on four mum's retreats organised by MDNSW. Describing the mum’s retreat as a “blessing,” Sonya reflected on everything she’s been able to take away from these experiences. “I have gained knowledge on numerous topics as these mums have a vast amount they are willing to share.”  

The sense of community at these retreats runs deeply with Sonya describing them as a “time to get away from the everyday and relax and have a giggle with mums in similar situations.” 

Whilst living with an undiagnosed neuromuscular condition is filled with unknowns, Bailey and her family have been able to find respite in not only being able to attend MDSNW programs but also the support that is available to them through MDNSW. When asked about the support they’ve received from MDNSW staff, Sonya was able to sum it up in one word – incredible. “They are always so caring and empathetic, and willing to share information. They go the extra mile to help us navigate life with muscular dystrophy.” 

By becoming involved with MDNSW and the broader neuromuscular condition community, Sonya and Bailey have noted the vital impact this has had on their lives. According to Sonya, when Bailey returns from camp “she comes home beaming with enthusiasm... children with MD are restricted in comparison to their peers and being able to attend just one camp per year is invaluable to their wellbeing.” 

MDNSW’s programs and events are vital to the wellbeing of families in our neuromuscular community. Help us help families like Sonya’s and make a difference in the lives of people living with neuromuscular conditions today. 

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"I have gained knowledge on numerous topics, these mums have a vast amount they are willing to share."

- Sonya

 


"Bailey's life revolves around therapies; physiotherapy & hydrotherapy, to keep her as healthy as can be... as time went by, I realised our family needed support, guidance and understanding from like-minded individuals. So, I reached out to join MDNSW.”

- Sonya, Bailey's Mum

 

At camp "children like Bailey can be with peers where they don’t feel different. It’s a fully inclusive environment for a week each year… she comes home beaming with enthusiasm.”

- Sonya, Bailey's Mum