Brooklyn
This is Brooklyn who is now 3.5 years old.
Brooklyn was diagnosed at 8 months old in March 2023 with CD40 Ligand Deficiency after a 2 month hospital admission that we thought was just a virus but turned out to be CMV and PJP.
In April 2023, we headed to Newcastle for an assessment and luckily exactly 5 months to the date we got the genetic results back Brooklyn had his BMT in October 2023.
Brooklyn at the age he was, didn’t know what was happening but we luckily had a window in our room that looked out into the car park and road which we have fond memories of seeing the busses several times a day which Brooklyn loved looking out for. He still very much loves all vehicles and transport!
He had a bit of a rough ride with mucocitis and recurring CMV which then led to kidney and blood pressure issues which are fortunately all resolved now. Brooklyn does still have a feeding tube in place today as he is still not great with eating but we hope it won’t be long term as otherwise he is a healthy, happy and thriving boy!
Written by Natassia