Team Taj fundraiser for an accessible home
Our son Taj, was born on 3 May 2018 with a severe brain injury due to something called Hypoxic ischemic encephalopathy (HIE). We had no indication anything was wrong during the pregnancy, but in the minutes after he came into this world it quickly became apparent that he was sick. Very sick. Within the next 24 hours we had been admitted to 3 hospitals, still with no idea what went wrong or just how severe his condition was. 
We ended up spending a little over 3 weeks in the Neo Natal Intensive Care ward at the Royal Children's Hospital, Melbourne. I can't really describe just how painful that was for us. We had discussions with doctors about him not making it, his body failing him, and the potential reality of losing our first born son. I remember words like neurological damage, but not knowing what that really meant, I recall longing to hold him but not being able to for 5 days, while we watched him fight for his place on this planet. During this time, our minds grappled with foreign medical terminology and an emotional turmoil neither of us had ever experienced. We were slowly adjusting to the knowledge that our son was irreparably damaged and we would not know what his future might look like, and whether he would have any sense of a "normal" life.
It's been almost a year to date now and we still don't know why it happened. We do have more pieces of the puzzle in place though. We know that he has Cerebral Palsy and his disability is profound with nearly his entire brain affected. He has dystonia. A condition similar to Parkinsons involving involuntary movements and spasms that are sometimes painful. We also know that his disability, brain damage and everything that happened to him has not dampened, lessened, or removed our insanely powerful love for him. We adore him more everyday because of it and he brings us joy in his own ways at every opportunity.
The journey for us as a family from here is going to be tough. Emotionally, physically and financially. We have only been able to make it this far because of our amazing family and friends no matter how far away they are from us geographically. Both Liz and I are stubborn people who are loathe to ask anything, and with a tendency to just get by with what we have, but we have had to be honest with ourselves, even with the yet to be determined NDIS funding, we'll need help supporting Taj's needs into the future.
Taj accesses an amazing team of therapists. Physiotherapists, occupational therapists, speech pathologists, specialist pediatricians, the list is long. He is well known and liked at the Royal Children's Hospital in Melbourne.
The difficult reality about supporting children like Taj is that adaptive and supportive equipment and therapy is often expensive. Accessible strollers to support him posturally, enabling him to participate at childcare and at home come in the tens of thousands of dollars, intensive therapy sessions in Sydney again in the tens of thousands, splints, orthotics, supportive sleeping systems. NDIS will cover some of this, but there will inevitably be a gap or some therapies that are not covered. And the requirements for these supports will be lifelong for Taj.
This is why we're starting the GoFundMe. We wanted to create a space where people can support Taj in his journey by becoming part of his ever growing family: #TeamTaj.
Firtsly, we gotta have a hashtag right!?
Friends, family and acquaintances have asked if we have a fundraising page, because the amazing thing about people in this world is, they want to help. But, being a member of #Team Taj doesn't mean you need to donate money, it just means you're committing to being there for him in some way, shape or form. So really, you are already a member of the gang! You don't have to donate. It can be as simple as sending positive vibes his way and if you have an opportunity to help another family with a special needs child, do it. It's incredibly tough but small gestures are what get us through the day, so you should know that any small gesture you make, has a big impact on families like ours.
You can also help by sharing this amongst your networks and social media channels,
We will be using this platform to raise funds to cover the gaps in funding. The page will also be a conduit to promote other fundraising we will be involved in for Cerebral Palsy like Steptember.
You can check out the page to see the latest equipment, activities or stunts that Taj has pulled, and where we have invested the money you raise for him. We set the target quite high, as we see this as a longer term goal, an ongoing project. 100% of the money donated will go to support Taj's medical, therapeutic and equipment needs.
There's no time limits here, this one is for the long haul and we'll keep you updated along the way.
Love,
Ben, Liz and Taj