Thanks for taking the time to visit my JustGiving page.

As many of you know, Isla-Rose has been diagnosed with Congenital disorder of glycosylation (CDG)

CDG is a very rare but serious disorder that is passed down through genetics. 

The day Isla-Rose was born she was taken to Neonatal intensive care in Altnagelvin Hospital where she spent the first 6 weeks of her life undergoing investigations and tests as to why she was unable to do certain things, under the care of the amazing staff & nurses there. 

Isla-Rose was then discharged from Neonatal early December 2022, we got her home and put all our concerns on the back burner to spend time as a family. It was then on the 17th of December Isla-Rose was flown to Birmingham women and children’s hospital and admitted into the small intestines and liver ward again, under going investigations and numerous amounts of tests were carried out. 

She was then discharged and flown back home to Altnagelvin on the 20th of December and then discharged on time for her first Christmas. 

We were on cloud 9 having her home and being a family again, but that was short lived when she went for her routine bloods on the 9th of January and readmitted to Altnagelvin on the 11th of January as her infection markers were too high and her liver started playing up again… we were then blue lighted to the royal hospital for sick children in belfast where we have been since the 16th of January and continue to be for another couple of weeks. 

It was on the 7th of February (3 days after her daddys birthday) we got her diagnosis. It didn’t come as big of a shock as we thought it would but upsetting nonetheless. At nearly 4 months old she all she’s known is hospitals, doctors, nurses and specialists undergoing continuous tests and treatments and its only the beginning… 

She has her own consultant in Derry, she is known to specialists from Derry to Belfast to Birmingham to oxford and to Dublin, who are all working side by side daily to care endlessly for my baby girl… 

Isla-Rose is the most happy, content amazing little girl and i have the privilege of being her mammy x

Its been a hard journey but it’s our journey & spreading awareness is what i want to do… 

Thank you