Rhys and Jamie's story

First published on 15th March, 2017 by

Our children come from all walks of life. They are somebody's brother, sister, son or daughter. They all have vastly different lives but they all share one thing in common. They are KidzWish Kidz. In this article, Rhys and Jamie's mother Louise shares their family story. 

When I was pregnant with my twin boys there were no signs that there would be anything medically wrong. They were born 6 weeks premature and they spent 2 weeks in the NICU at Wollongong Hospital and then another 6 weeks in the special care nursery at Figtree Private Hospital.

Jamie and Rhys are fraternal twins but they are genetically identical, which means that what is wrong with one is wrong with the other. This is a rare genetic disorder which the doctors are still trying to figure out. Even though they are genetically identical Rhys has more medical conditions than Jamie.

My twins have multiple medical conditions that include permanent brain damage, autism, 3 blood disorders, a chromosomal disorder, sleep apnoea and epilepsy to name a few. It seems that every time we see the Doctors they add more things to the list of conditions.

My boys are very restricted in what they can do, the blood disorders mean that their immune system is compromised. They cannot go to school, playgrounds, and shopping centres or anywhere that could give them a risk of picking up a cold, flu or infection. What this means is that they are at home with me 24 hours a day, 7 days a week. Many people would not consider my boys to have a disability as their issues are not visual, so this makes it harder for some people to understand.

When the boys were 7 years old we were referred to KidzWish's Speech Therapy and we were asked if they would like to attend their Music and Dance Program. This was our first introduction to the wonderful people involved in this organisation. The team at KidzWish are all amazing people, not only have they become a life line for myself and my boys but they have welcomed us into their KidzWish family. We have been attending KidzWish for 6 years now and we have had the opportunity to go with KidzWish to Taronga zoo, cruising around Sydney Harbour and many other outings that I could not have done without them.

The KidzWish Music and Dance Program is the only place that my boys can attend. KidzWish Place is a safe and loving environment. Without KidzWish my boys would be at home all the time with no social interaction with the other children.

KidzWish’s Music and Dance Program is not just for the children, it also give the parents time for adult conversation and interaction, as many parents do not get the opportunity to go out and have adult time.

I would like to thank you all for your support and kindness, without people like you it would be extremely hard for KidzWish to do everything they do. With your support they will be able to continue the great work they do and expand their services to be able to help more children and parents in need.

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