Her daughter was born with an incurable disease and this is what she wants you to know.

A brave mum shares her story.

When I first contacted new mum Kylie, her 16-week-old baby Brianna was in hospital battling acute bronchitis.

She’s home now, however, since her birth in February, little Brianna has spent a lot of time in hospital. She’s been admitted seven times, in fact, due to her battle with Dopa Responsive Dystonia, a rare genetic disease that her mother was also born with.

We spoke about how they were coping – and how the Children’s Medical Research Institute (CMRI) was helping.

Q: When did you first notice that Brianna might be ill?

A: It was around two to three weeks of age I noticed her symptoms. I knew what symptoms to look for as I suffer from this disease. Dopa Responsive Dystonia, also known as Segawa’s Disease, is rare and in Brianna I started to notice with her left foot turning in and her head only turning one way and locking in that position, and other abnormal postures and tremors in the hands.

Just as an FYI, you should know that this is an advertorial for Children’s Medical Research Institute.

Q: How will it affect her as she gets older?

A:  As she gets older and is more active, she will tire out easily as the day progresses and lack coordination.

Q: How have your lives changed since her birth and diagnosis?

A: Our lives have changed in the way we have to be more careful with her and when she starts walking she may fall over more frequently due to this disease, and when she is sick with things like the common cold it makes the Dystonia more painful and noticeable.

Q: You have your own health challenges to attend to as well, don’t you?

A: I have also been to hospital four times since her birth. Two of these times were for having Dystonic attacks. I’m currently recovering from a fractured foot and major ankle injury from an accident in April that requires surgery. That’s booked in for August.

Q: When did you first hear about CMRI?

A: I first heard of CMRI from a Facebook video that a friend shared on their wall. I haven’t been involved with them before.

Q: How have they helped?

A: Obviously they have taken our story and will use it at fundraising events they hold. Hopefully this helps more people donate so this disease and other childhood diseases can be helped with finding a cure one day soon.

Q: How are you coping so far?

A: I’m coping the best any new mum I think is, and whilst it’s hard knowing my daughter has the same disease I have, I know I can offer her the best care and support as I have gone through the ups and downs of living with a disease with no current cure. I have the support of my close friends and family and Brianna also attends child care one day a week, and the centre is fantastic.

Q: Did you know when you fell pregnant that there was a chance your child might suffer from the same illness as you?

A: My neuro did tell me many years ago I had a 50/50 chance of passing it on.

Q: What is your hope for Brianna?

A: I hope Brianna can reach all her baby milestones – whilst some may be delayed – and live a happy life. I look forward to taking her to the local park, zoo and aquarium when she is a bit older and I’m enrolling her in infant swimming later in the year.

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How do you decide whether or not to treat a very sick baby?

CMRI is an independent organisation committed to unlocking the mysteries of childhood disease and has helped save the lives of thousands of children. Donations in memory of loved ones can bring real hope to families battling illness. There are many ways you can make a difference for healthier kids and brighter futures. To find out more, click here.