Support Daisy and her family during this trying time

Hi there. My name is Karen and I’m Brock’s mum (Daisy’s Grandmother)

Daisy was once a bright and bubbly little girl that has recently taken an unfortunate turn and has now put herself in what appears to be a comatose state for over 100 hours. Unfortunately there aren’t any medications or stimulants that are safe for Daisy to have to help her wake. Daisy has encountered countless needles/blood tests while ‘asleep’ and doesn’t so much as bat an eyelid.

On the 27th on June 2024, Daisy was finally diagnosed with a condition called Tuberous Sclerous Complex, a rare multisystem autosomal dominant genetic disease that causes non-cancerous tumours to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs and skin.

The family was given this diagnosis on the same day their first daughter had passed away 4 years ago. I couldn’t even imagine feeling this kind of pain and grief.

Her diagnosis to this date are:

Tuberous Sclerosis Complex

Focal Cortical Dysplasia

Epilepsy

Infantile Spasms

Encephalopathy

But on-top of that the doctors are still bending over backwards trying to understand why Daisy decides to completely shut down with no response and put herself into a comatose state. All medical evidence so far shows that Daisy should be awake and well, with of course the exception of her severe developmental delays. but sadly that isn’t the case. Investigations are taking place and information regarding Daisy has been expedited to other hospitals around not only AUS but other counties to help find answers.

Daisy has been unresponsive for over 100 hours now and we have no idea when she will choose to wake herself up. This could be tomorrow but it could also be in 6 weeks, but it's something that's only safe for her to do herself when she's ready.

Even after Daisy decides to wake we will still have the long journey of trying to figure out what is causing this level of sleep and slow brain activity.

The doctors and nurses are doing absolutely everything in their power to help Daisy but her case has even left them stumped. The neurology team are working with other hospitals around AUS and other countries to try and find her new diagnosis.

Allanah & Brock have 3 other children, James (7), Chase (3) & Ellie (2). They are also needing to relocate their family to live closer to family support and the hospital.

Reasons the family needs to use GoFundMe:

Sadly due to illness and injury, Brock has been off work for sometime, the circumstances are of a more personal and private nature but unfortunately this is out of his control.

Allanah has also had to stop working and accepting contracts whist needing to keep present with Daisy both in and out of hospital. Unfortunately, Daisies condition does not allow her to be left alone for any period of time.

As a result of the above circumstances, it’s financially taken a toll and has made it difficult for Brock and Allanah to be able to arrange care for the other three children due to the amount of time expected to be spending in hospital. Allanah and Brock will need to move to the Sunshine Coast where the support network is significantly greater.

Let’s rally together to support Daisy and her family in this time of need. If you know the family personally you would know they would never be the ones to ask for help. No contribution is too small & every little bit counts and will help this beautiful family.

Thank you all for your love and support.

FAQ’s:

Q. How long does Daisy typically sleep on a good day?

A. Daisy will usually sleep anywhere from 20 to 22 hours on average in a 24 hour period when she’s having a ‘good day’.

Q. What caused Daisy’s illnesses?

A. Her illnesses are mostly genetic. This means that they have been past down through our family genes and she has inherited them.

Q. When was Daisy’s condition first noticed?

A. Daisy had always been a big sleeper since birth, we always knew something was wrong and went to multiple doctors to check but unfortunately it was just overlooked at that time. Unfortunately we don’t have a diagnosis for Daisy’s sleep condition and slow brain condition just yet.

In terms of her other conditions, they were noticed at roughly 5-6 months and clinically diagnosed at 11 months old.

Q. Will Daisy be able to stay awake like an average person would?

A. Possibly. Unfortunately we don’t (or the doctors) know just yet what is causing Daisy’s brain to slow right down & putting her into her sleep stages and comatose states.

Hopefully when our genetic results come back, we will have more of an idea on what to expect moving forward.

Q. Will surgery help?

A. At this stage, surgery would not be a benefit. In the future, there’s a high chance Daisy will go through brain surgeries but at this point, surgery isn’t something that is safe, practical or will hold any benefit for Daisy’s current condition.

We do hope that people are okay with the following.

Allanah and Brock are so grateful for all the love and support people have shown.

With any excess funds available, they intend to donate to the RMH & TSC foundations.

Thank you again for all your support.