Please help Zareena live comfortably w Tay-Sachs

Hello and welcome,

First off, thank you for your support by actively visiting this page. My family & I are eternally grateful for all the love and support we are receiving as Zareena’s story is being shared and more awareness created around Tay-Sachs.

Our beautiful Zareena was diagnosed with Tay-Sachs disease on Wednesday 21st April 2021 at the age of 5.

Tay-Sachs is a rare neurodegenerative disorder that destroys nerve cells in the brain and spinal cord. Development slows in the individual and muscles begin to weaken. Over time, this leads to seizures, vision and hearing loss, paralysis, and other major issues. These symptoms persist until they lead to death.

Prior to her diagnosis, my brother Hank and his wife Yash endured a long and painful journey of seeking help to understand what was happening with Zareena. Countless medical appointments, referrals, misdiagnoses and testing over the span of almost 2 years, only to arrive at an answer which is any parent’s worst nightmare.

As you can imagine, the intial shock was enough heartbreak for us as a family. However, over the past year, our struggle with this new reality really began to set in as any hopes and dreams we had for Zareena were quickly disappearing as she continued to regress. This had a massive impact on us all, but especially more so for Hank and Yash who have had to suffer seeing their first born be taken away from them bit by bit each day.

Whilst the emotional and mental struggles have had their own challenges, the financial struggle to provide for Zareena has been immense. We have been so lucky to have the support of Very Special Kids, The Rare Find Foundation and other charitable organisations who have helped us along the way – not only with their generous donations for equipment, but also providing a safe space where Zareena and our family feel loved, heard and seen. We are so blessed to be part of these organisations who focus on children with rare diseases such as Tay-Sachs and can’t thank them enough!

Despite the support we currently have, due to being New Zealand citizens – Zareena is not eligible for receiving NDIS (government) support here in Australia. This means that a lot of her specialist appointments, therapies, equipment and medications are self-funded. As mentioned previously, some organisations and associated families have been kind enough to donate or loan us items we have needed for Zareena. But again, this can only allow us to go so far in making sure she lives a comfortable life.

Therefore, Hank and Yash have made the difficult decision to migrate back home to NZ for Zareena. Understandably, this decision has been a hard pill to swallow for me - however it’s the best decision for her, so she is able to receive the much-needed support she requires on a daily basis. This also means she will be surrounded by her loved ones and extended family when she inevitably enters the palliative stage of her life.

Many of you, our loved ones have offered to help Zareena and my family in some way. And whilst I know Hank & Yash would never ask, I believe no parent should have to suffer in silence to provide for their sick child. Especially when the costs to do so are exorbitant.

This Go Fund Me has been started to help assist Zareena with whatever she needs as soon as she needs it. This will allow Hank and Yash the opportunity to focus on making lasting memories with her and ensuring that she is as comfortable as possible for the life she has remaining here with us. All funds will be used for any resources she requires relating to her care. Because Zareena’s needs are ever-changing due to the nature of Tay-Sachs, I have set an open goal. Having said this, I am currently aware of existing costs Hank & Yash face being in surplus of $50K - this includes seizure equipment and training, relocation back to NZ, specialised disability equipment, medicines, specialist appointments, therapies and the list goes on. I hope in starting this, we can help bridge the gap even slightly to help relieve some of the financial stress they have.

We know we will not have Zareena here with us for much longer, but we will cherish every single moment we do have together. 

On behalf of Zareena & my family, I would like to say thank you for your generosity. Every donation is highly appreciated and we cannot be more grateful to have your support! 

We also understand that not everyone will be in a position to donate, so we kindly ask that you share our story to spread further awareness. 

With all the love and gratitude,

Monica x