A lot of people from our friends and family group know about our son, Ethan.
Either you've seen our ton of pictures and posts or have been lucky enough to meet him in person.
What you may not know is that Ethan has Trisomy 21, more commonly known as Down Syndrome.
This was something we discovered early in the pregnancy but have avoided making it public because we want everyone to know him as 'Ethan' and not 'that kid with down syndrome'
As is not uncommon with down syndrome children, Ethan was also born with two holes in his heart (AVSD) and respiratory issues.
Testing as he has grown over the last 3 and a half months have shown that these have lead to low oxygen saturation and severe pulmonary hypertension and other issues including a lot of fluid around his heart and lungs and possibly an enlarged heart.
To get this fixed, we have been sent interstate from Hobart to the Melbourne Children's Hospital.
He is constantly monitored, on oxygen and looking at getting heart surgery in the next 2-6 weeks, to be followed up with respiratory teams after.
The Hobart hospital has been kind enough to get us here, and organise accommodation for the time that we need it.
Why we're asking for help:
Unfortunately, day to day living in and around the Melbourne Children's Hospital is not cheap.
We still need to pay the bills for home as well as pick up groceries, try and find balanced meals for ourselves and cover the costs for general living and getting around.
My regular fortnightly salary received on Wednesday was gone by Friday and we're already dipping into the small amount of savings we have aside.
Our savings were already low due to costs incurred for his multiple stays in Hobart hospital through the last few months.
Also, as much as my work has been fantastically supportive and more than accommodating with a lot of paid leave, I'm running low of holiday and carer leave and may need to start taking unpaid leave to remain here, as it could take Ethan weeks to recover.
Finally, if we can get enough money together, we'd also like to bring our girls (15 month old Shylah and 8 year old Jade) up to Melbourne to see them as we haven't seen them for a week, which is hard enough as it is and the possibility of not seeing them for 2 months is one of the hardest things as any parent could imagine.
Any excess money we receive will be directly donated to the Melbourne Children's Hospital who have been great with helping us and looking after Ethan so far.
The 'goal' that we set above was just an arbitrary number and doesn't really reflect anything.
Thanks for your time.
All support is appreciated.
- Jen Cleary
- Vicki Kearines
- Bassim El-Wakil