It has been a while since I have been able to write about Diyanna and I sincerely apologise for not being able to update as often as I should or could.
They say when it rains, it pours, and it all came to a head last year when our worst nightmare was realised. In May 2021 Diyanna caught a viral infection- her first in almost 2 years. The infection snowballed into a chronic infection that consumed most of her right lung. At the hospital she was found to be anaemic, the antibiotics were not working, her seizure activity was increasing… She was so weak.
At home, we were having problems with the builder hired to do the modifications and renovations and NDIS had rejected our home modification application for the 4th time on the basis that we had not proved the need for such modifications; even though we had submitted 350 pages worth of reports and letters from doctors and therapists.
The doctors were not sure if Diyanna would make it, and we found ourselves at a dead end in every possible sense… again. One could say that it was our “Annus horribilis”.
But the belief that there was light at the end of the tunnel kept us moving. In July we set up a gofund me page for Diyanna to help fund the modifications and it raised almost $25,000.
Diyanna slowly pulled through and by the end of September, after nearly 3 months at the hospital, we were able to bring her home. Her right lung had sustained significant trauma to the point where feeding her orally was dangerous-She is now tube fed.
Charmaine Driver the principal of Darling Point Special school, introduced us to Michael Jullyan. With his support we decided to finish the modification ourselves.
By December 2021 with Michael and his team in the picture, things started turning around on the modifications and renovations front. Dinesh’s school friends Tony Murray and Lyle Ferdinando took over the plumbing and the electrical works respectively. And Dinesh’s childhood friend Nigel Barnett gave all his free time to help with project. Friends, family and strangers came together to donate their time and skills in various ways to help make the home ready for Diyanna.
At almost the same time Dr David Kilner who had taken over as Diyanna’s respiratory specialist contacted us with a possible treatment for the damaged lung. Diyanna would be put on steroid treatment for almost 4 months with the hope that it would help reduce the inflammation there by stop further damage. It was a risky procedure as the side effects of the treatment could further deteriorate Diyanna’s health. Before leaving the hospital in September the head of the respiratory department had met us and said that he would not recommend such an intervention for a child like Diyanna and that we should accept and enjoy the time we had left. But Dr Kilner felt it would be the right choice for her and we trusted him. He was the only one who actually listened to Diyanna’s history and was willing to think beyond the norm.
Diyanna started her steroid therapy just after Christmas 2021. Because of the prolonged use of steroids her tummy and gut lining suffered causing her to vomit blood when ever she went on Panadol, Nerofen or anti biotics. During these episodes she would have non stop seizure activity which would only stop with the help of her rescue medication Midazolam. She is now on a medication to protect her tummy and gut.
An x ray taken in the middle of the therapy showed some improvement in her right lung. Another would be taken in August. Towards the end of the steroid program Diyanna got covid 19. But she managed to pull through without needing a hospital visit.
With the completion of the steroid program Diyanna started some schooling again. But going into winter covid, and other viral infections started climbing and we decided to keep her home till spring. In June we were able to celebrate her 7th Birthday. For us it was a small win. She had come so far and proven the doctors wrong again. So far, we had managed to avoid any respiratory infections.
In the lead up to meet Dr Kilner in August another x-ray was taken. And we received the new we had been waiting for. The inflammation in Diyanna’s lung had subsided to the point where there was no trace of it on the x ray. Until another bronchoscopy is carried out the extent of the internal damage is not known but we can be hopeful that the outlook is not as bad as what it was a year ago.
Unfortunately, her team still has no clue as to what triggered the inflammation. One thing that they did say was that Diyanna can slowly start oral feeds if she has the right equipment as the evidence doesn’t show continuous aspiration. According to her team this was most likely caused by substantial single event aspiration or pseudomonas infection or a combination of both.
Sadly, this also means that the inflammation can flare up at any time triggered by any type of respiratory infection. We still need to be cautious of the people who come and go from our home and the places we take Diyanna especially during the flu season.
After the 4th rejection from the NDIS we decided to take Diyanna’s case to the Administrative Appeals Tribunal (AAT). Initially we were told it might take 2 or even 5 years for our case to be heard. But after speaking too them over the phone and explaining our situation we were given a date for the 1st mediator meeting for October 2021, to try and reach an out of court settlement.
We were not able to secure a NDIS advocate or a lawyer so I was representing Diyanna during the process going against the best lawyers the government could get. During the 1st call conference, I was asked to re-submit all 350+ pages of documents to the NDIS. The reason given was that they could not find some of the documents. That they might have been misplaced or not attached appropriately to Diyanna’s file. It is extremely hard for me to believe that documents that were submitted electronically to their portal and emails would have gone missing. The resubmission was made and the NDIS appointed and independent assessor to come and assess Diyanna and the modifications.
The assessor came out towards the end of November 2021 and spent 3 hours with us going through all the details from Diyanna’s diagnosis to future needs. Her report was finally released by the NDIS to us in mid-January of 2022. In her report the assessor agreed with ALL recommendations and requests given by Diyanna’s OT. In other words, the NDIS should fund all of the modifications and equipment requested. Her report went further to state that Diyanna required 24 hour one on one support as well as other pieces of equipment which we had not requested but would need in the future.
Having her affirm what we had been fighting for over 2 years was a big win for us and the NDIS agree to fund the wheelchair and care modifications. But they still refused to fund the modifications saying that they required her to write a home modification report on our old home. A home that we sold 2 years ago, a home we no longer have access too, a home which had 2 independent reports (2018 and 2019) and costings submitted to the NDIS. We were back to square one. I requested the mediator to send our case to the hearings as I felt that the NDIS was just making a mockery out of the mediation process. The hearing was scheduled for August 2022.
Thankfully we did not have to go to the hearings as the NDIS finally agreed to find most of the modifications. It may not have been everything that was recommended but fighting with them for 3 years had taken its effect. We accepted the package that was designed for Diyanna which is still a much better outcome that what she had previously.
A few weeks ago, after waiting for 1.5 years we finally got Diyanna’s wheelchair. Which has been a game changer for her and us. The car modifications however will not happen till mid next year mainly because of the shortage of labour and materials which has exacerbated the waiting lists.
Most of the home modifications are now complete. Diyanna is able to go to the outside deck and feel the breeze and sunshine. She is able to go in the garden join us making cupcakes in the kitchen and for the first time go into the city to see her cousin sing. She is finally able to be a part of the family, to truly experience the little things in life that most of us take for granted.
What it takes to raise a child like Diyanna cannot be described and I can only say that without Dinesh she wouldn’t have made it this far. For the past 7 years he has kept his career on hold, not waiting to rock the boat as the stability and flexibility he had in the public services meant we were able to manage Diyanna’s care. And just like everything else in our life, his patience, commitment and dedication to our daughter was rewarded with a wonderful new job at Air Services Australia.
But raising Diyanna is not something that Dinesh and I can do alone. They say it takes a village to raise a child. Well it takes an army for a child with a rare medical condition. All this would not have been possible without Diyanna’s army of supporters. She is alive today because of your support, she is thriving because of your support.
The kindness and generosity shown to our family cannot be described. On behalf of our family and Diyanna our Warrior Princess, thank you from the bottom of our hearts.
Leave a Reply