I'm a desperate Mum reaching out, asking for any and all support and ideas you may have. I'm sorry this is long.

Our beautiful Mylah has a genetic condition which limits her life to an average of 2-4 years (and her life will be incredibly hard, severe disabilities and not meeting many milestones, but a life we can fill will family and love). However, within this genetic condition there are many different paths and outcomes that affect this lifespan. Sadly she seems to have a significant part of the chromosome missing, which means she has more and more issues and complications to deal with. These limit her life even further. This is all without taking her prematurity, and the issues relating to that, into account.

Currently one of her heart conditions is the major issue. Because we are able to manage this (for now) with the assistance of medication, it buys us some time. Time where we get to know Mylah; cuddle her, kiss her, study her tiny little toes and super long fingers. Make memories as a family that will last us a lifetime. Allow Flynn and Addison to touch her, read to her, sing together. Build blocks, play with lego, do dance concerts and sing 'Defying gravity' as loud as we bloody can
BUT we can't make these memories together.

Covid and restrictions mean the kids aren't allowed on hospital grounds. We keep being denied exemptions because the medication that is buying us time, the time to make family memories, means we are 'managing' Mylah's condition. For a child with a heart condition, this medication gets them to surgery. A risky, long, complicated procedure, but one where a child can then hopefully go on to lead a healthy, happy life. We know the surgery won't change any long term outlook for Mylah, so for now we don't plan to put her through it (we also have a very very long road ahead to even get to the point of considering surgery, if it were even an option). But by 'managing' her condition, she isn't classed as terminal and at end of life stage, to be allowed further exemptions for her siblings to spend time with her.

As you can hopefully imagine, this is breaking me. I'm destroyed as a Mum. All I want, all I need, is for my 3 kids to spend time together. Time to make those memories. Be a family. Time to help Flynn and Addison understand what is going on. They will never understand; hell, Raoul and I are struggling with all this. But while we are separated, I can't answer their questions. I can't make moments for them to remember in the years ahead. I don't want them to remember Mylah knowing only that she will die. Mylah's life matters, and they need to be able to create moments within her short life to remember their sister. I need them together, to help me explain everything to them in the future. To help me deal with everything to come.Raoul and I are currently staying in accommodation provided by the hospital in Melbourne.

The kids are so well loved and being looked after by my amazing parents in Bendigo. They are allowed here with us in the accommodation, but that is all. So regardless where I am, my children are separated. I don't want to bring Flynn and Addison to Melbourne with covid cases everywhere; they are 1000% safe in their bubble at home, but at the same time, they need their Mum and Dad still, and they also need their baby sister. We don't know how long we will be here; we are guided by Mylah and her fight. We will stay as long as we need to. Raoul's leave will run out, life will still continue, but while Mylah fights, we fight alongside her, and appreciate every single minute we get.

I'm reaching out to anyone and everyone, in pure desperation, in the tiny hope that somehow, someway, there is a chance or way forward to get my kids together. 30 minutes every 2nd day I'd be bloody over the moon with right now; 60 minutes every 48 hours to be a complete family. I know everyone needs to stay safe, but how sad is that, when covid means I can't even have my family together for 1 hour every 48 hours. At this point I'd take 5 minutes together!

Covid is destroying my family, destroying my mindset, and destroying everything I need to help us all in the future.

I'd like to say that everyone in NICU knows me, knows us, knows our sad journey and future. Knows that I break down and cry each and every day. And they are fighting with high up to try and get us this family time. But I just need to reach out myself, to see if anyone else can offer a way forward. I'm destroyed, I'm at the bottom, and I just need my family to be together

I'm sorry for the novel, I thought I needed to add some context, but it's also from the heart. Long winded, but 100% laying everything within me on the table.