Lena’s hydrocephalus and 8p23 deletion

Hi everyone! I’m the mum of beautiful Lena (9.5months) and mum of Oliver (2.5 years).

UPDATE; 

Lena has come back positive unfortunately for a chromosome mutation. She will need interventions by multiple people (OT, Physio etc) for many years to come. 

Lena luckily had great news from our neurology appointment! 

We now have to see cardiologist in Sydney, get a kidney scan, and a new head ultrasound, stomach scans and eye/ hearing tests. 

Lena has had trouble since birth (global delay, feeding issues, TTN on birth, NG tube, NICU care) and we’ve just recently found out she has something called “Hydrocephalus”: which is essentially spinal fluid building up on her brain. 

I have been travelling to and from appointments by myself weekly, sometimes 4-5 times a week. So far her appointments haven’t been local. 

We are also trying to find a new home to live in (before the end of the year). 

anything and everything helps us, so please if you’re able to help even with the smallest donation we would forever be grateful for the help we can get. No donation is to small or big. 

This will go toward bills, travel, parking, accommodation if and when needed & anything else needed for Lena. 

Everything is appreciated and will help us so much getting to these appointments and getting our beautiful daughter the help she so desperately needs.