Help Xander Walk
As most of you already know Xander has had a rough start to his little life, and for those of you who don’t know I’ll fill you in on a little bit of the context around his beginning.
Xander was born premature at 28 weeks in August 2019. He was really healthy and the only issues he had were relative to being premature. (Respiratory support, fluids, tube feeds) and all was well.
But at three weeks old, Alexander suffered a catastrophic stroke. The type of stroke he had was so rare he was only the fourth neonate reported (Superior Sagittal Sinus Thrombosis) and of the only other three reported, none of them survived.
The vein that was clotted was unfortunately the main vein that drains blood from the brain, so with every single pump of Xanders heart, there was a constant stream of blood being pumped into Xander brain tissue and cavities. There was no medical intervention available, no survivors and no hope.
We got pulled into a family meeting with all the senior specialists and informed that Xander only had three hours left, as the rate in which he was bleeding was so fast that that’s approximately how long it would be before his brain was completely drowned in blood. That conversation was followed by a conversation of how I’d like him to die... whether that was on my chest or in his incubator.
We prayed, we sang, and I turned to lord begging for one more night with my baby, just a little more time to feel his heart beating, to hold him tight, and our prayers were answered, he made it through the night. All the people around us began to send their prayers for Xander, to send well wishes and love and support. Xander spent two weeks in a coma being told he wouldn’t make it through the night but he fought and fought, and we saw miracle after miracle and eventually Xander woke up.
He spent 3 and a half months in a Neonatal Intensive Care Unit before he was finally discharged. Xander is 8 months old now, he’s had three brain surgeries for hydrocephalus caused by the stroke and has spent more of his life in hospital, with constant admissions then he’s spent at home with us. But his life is a pure miracle. He is vibrant and he is strong. He engages and does everything we were told would never be a possibility for Xanders future. Xander loves music and loves new faces and new people. He is so dearly loved.
•••
Two months ago Xander was diagnosed with cerebral palsy and scored 41/78 in his HINE test. Which is one point off being non ambulant. (wheelchair bound)
So right now we have an opportunity with Xander to give him all the intervention (physio, occupational therapy, speech therapy) to give him the best quality of life, and give his brain the best chance to create new neural pathways to compensate for the significant damage, and we have this short window where that’s going to make a huge impact to Alexander’s Quality of life.
I am saving for a vibration machine called a “powerplate”. Physios from all around the world swear by the power of these machines to help tone and muscle strength in children with Cerebral Palsy and I have come across some studies to prove its affect (I will attach below). As with cerebral palsy, people suffer with tone issues that affect muscle movements. The brain damage destroys neurons and pathways that can cause involuntary, painful movements or leave the person so floppy it takes 3x the amount of energy to do something that we take for granted.
This machine costs more then $5000 but I truly believe it would make a significant impact on his future, and enable Xander to eventually walk, and anything you can do to help would make a huge difference. Whatever is donated will be put towards that machine.
As a young single mother, there has been a financial challenge with all the support required to care for a baby like Xander, but it's my responsibility to advocate and fight for the best quality of life for him. Everyday this little boy fights and fights to be here with us, and I just want to give him the best chance at doing that.
If you have the means, please help, every cent brings us closer to making this possible but please don’t feel obliged to donate if you are not able to, a share would mean the world, or a prayer (which the prayers over his journey have been so vital for him)
Thank you
I've attached some more photos of Alexander below xx 
