Arian is a 5 year old boy with a rare, incurable & inoperable cancer in his brain stem. His time with us is limited but his dreams are not!!
In November 2015 our beautiful 5-year-old boy, Arian, was diagnosed with a rare, incurable and inoperable brain tumour called "Diffuse Intrinsic Pontine Glioma" (DIPG). This is a paediatric cancer and usually presents in children aged between 5-9 years old. It is located in the brain stem- the part of the brain responsible for important bodily functions such as, sleeping, bladder control, balance and breathing.
Due to its location, it is difficult to detect the presence of the cancer until the child presents with a disability- inability to walk or talk. The only physical symptom Arian had before diagnosis was the inability to turn his left eye. Because of this, doctors tried to reassure us that there was just a slight impact to one of his optical nerves (6th cranial nerve palsy). Therefore, nothing to worry about. The results of his MRI scan were devastating and unexpected. We caught on early, but it makes no difference to his prognosis. Children with DIPG have an average life expectancy of 8-9 months.
Over the past four decades there have been NO advances in treatments for this cancer. It is the most difficult thing in the world knowing there is nothing we can do to save our precious boy. Chemotherapy has no effect, as the drugs cannot reach this area of the brain. Radiotherapy is effective in temporarily shrinking the tumour, but this is only seen as "aggressive palliative care". Within months the tumour grows back, and re-radiation is not possible, as the brainstem needs two years to heal. Arian has shown signs of improvement since starting radiation, for which we are so grateful, but we understand that this relief is transient.
Our boy has always been full of life. He has a unique sense of humour, a skeptical and innovative mind beyond his years, he is obsessed with video games, loves swimming in our beautiful oceans, going for "spooky forest walks", and playing with his friends and family. However, the cancer has changed him tremendously and he can no longer enjoy the same things he used to.
With your help, we would like to provide Arian with the opportunity to live out his dreams within the short time we have with him. We plan on spending the funds raised through 'Give a Little' as follows:
1. Alternative treatments to help prolong his life (we haven't decided on a specific treatment yet, as there is no agreed best option available). These are in the form of:
- Clinical trials, surgery or other medical treatments (these can cost anywhere from NZD$25,000 to upwards of $500,000 - we are still investigating options with Oncologists)
2. Activities for Arian's enjoyment
- Early 6th birthday party
- Early Eid and Christmas party
- Rocket simulator (his dream is to go to space)
- Trip to Disneyland or a cruise (if his doctors permit travel)
- Travel to Gold Coast to visit Dream World, movie world, Sea World
-Travel to the South Island to see the snow
3. Any unused funds will be donated towards DIPG research in Arian's name or any other purpose you wish nominate.
If you want to pledge or want to donate an amount for a specific purpose please contact us directly to discuss any progress we are making on the specific activity.
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We're so excited to announce a new trademe auction that we've put together thanks to the kindness of our NZ celebrities.
We have a signed All Blacks jersey, plus numerous albums donated by NZ Musicians such as Hollie Smith, Anna Coddington, Electric Wire Hustle, Sorceress, Moana and the Tribe, Trinity Roots, One Million Dollars and Sugarlicks Records.
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This page was created on 30 Dec 2015 and closed on 16 Apr 2017.