Princess Diyanna

Most of you know our beautiful little girl Princess Diyanna. She is the apple of our eye and has been fighting a life-threatening condition caused by CACNA1E mutation. The effects of this gene are severe. Diyanna suffers from Epileptic Encephalopathy, Movement Disorder and severe Developmental Delay.  In short, her brain has constant epileptic activity and over 300 clinical seizures on her worst day. This makes it impossible for her brain to function normally which has caused her development to stop at stage of a 2-month-old. In addition to this she also can have dystonic posturing every 3-4 minuets which causes her much pain. Watching her suffer everyday has caused us (my husband and I) heart ache and constant worry. Our lives and the lives of our immediate family have been turned upside down.  

This fundraiser to help make our home safe for Diyanna. We are asking for help because we have reached the end of our options, we have no other choice left and have exhausted all possible avenues despite our absolute best efforts.     

Since May of this year Diyanna has been having pneumonia.  She never fully recovered even though she was on antibiotics and the doctors were not sure what was causing the pneumonia. In July we brought her in for further investigations and at this point we have been in hospital for 4 weeks. The doctors are still unsure as to what caused the pneumonia. During our stay we found that Diyanna had multiple other complications. She was founded to be extremely anemic; her liver function too had got skewed she was also found to be lacking some nutrient components.  

For two weeks doctors tried multiple antibiotics but nothing seems to be working in order to stop the fevers and she started deteriorating further. The dieticians introduced a new formula even though we had voiced our concerns knowing how sensitive her gut is to help get the calories she needed. This changed caused her to have acidic diarrhea. Now Diyanna has now got severe 3rd degree chemical burns on bottom which has added further complications to her fragile health. It took the hospital 4 day to take our concerns seriously and 3 more days before a proper pain management plan was put in place. The amount of pain and stress her little body has gone through unimaginable but yet she is fighting on. She had a blood transfusion and a change in antibiotics to try and help her get over the initial infection she had. 

The blood transfusion was successful and the 3rd type of IV antibiotics was able to get her WBC down to 27 from 48. Her infection markers are trending downwards. Her liver function is improving. Her pneumonia seems to be getting better. In all the infection she came to hospital for seems to be improving. The burns however will take months to heal.  At the moment she is on a cocktail of medications like oxycodone, morphine, clonidine and Bactrim to help manage her pain and infections.  

We are a long way from  being out of the woods with Diyanna's health. We have also been warned that there is a good chance that Diyanna may never make a full recovery. This means her care will become more complex. And without the right equipment and home modifications we will end up in the position we are in now back in hospital with some form of infection.  

Since coming into hospital we have contact NDIS on multiple times to try and explain what's happening with Diyanna the importance and the urgency of the home modifications which we have been requesting for over a year. But all our requests have gone unanswered.  
The way the things stand our home is not safe for Diyanna given her current condition and long recovery.  And it has become even more urgent for us to make sure that we are able to perform basic living tasks for Diyanna’s health and wellbeing.  

The modifications that are required on our house, are not cosmetic, and are purely functional. These are:   
           Modifications to the bathroom to accommodate her shower bed etc..   
           The widening of doorways so that her wheelchair can fit through   
           The addition of a lift  

The total cost for the modifications is close to $150,000 inc GST We are hoping to raise at least half of it so that we can go ahead with the most important components like the bathroom. With these modifications it will give Diyanna a good quality of life and we hope would give us the ability to nurse her back to how she was prior to this 3-month nightmare we are going through. Having these modifications would also mean that Diyanna would be able to grow with her siblings and we will be able to support Diyanna well into her adulthood as a family unit.   

Diyanna has had us around her 24*7. She has no life other than us. We are her world. We want Diyanna to grow, to evolve to one day be able communicate with us as best she can, we have hope that she will, one day. For that she needs her family around her at all times. She needs to feel safe, loved, wanted, she has to be an equal member of the family not to be isolated and restricted to one part of the home. A Disability caused by a rare genetic mutation shouldn’t dictate a child’s whole life or discriminate against a normal life.     
We love our daughter and only want to give her what every normal child has, the ability to be always with her family.   
Thank you for your kindness in helping our warrior princess. If you can please share her story.   
To know more about our journey please go to   

Donations (184)

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  • Anonymous
    • $100 
    • 2 yrs
  • Anonymous
    • $100 
    • 2 yrs
  • Anonymous
    • $250 
    • 2 yrs
  • Patrick Johnaon
    • $100 
    • 2 yrs
  • Amanda Wijesinghe
    • $20 
    • 2 yrs
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Cindy Perera Ranasinghe
Lota QLD

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