Jordan’s journey

Hi our names are Andrew and Samantha and we are fundraising for our baby boy jordan.

On the 26th March we received to worse news any parent could imagine. Jordan has been diagnosed with a really rare disease called Gaucher’s disease type 2. It’s a rare form of the disorder, Gaucher disease type 2 appears in babies younger than 6 months old. It causes an enlarged spleen, movement problems and severe brain damage. There is no treatment for Gaucher’s type 2 babies with this condition usually pass away by their 2nd birthday. Jordan did decline whilst in hospital due to contracting a respiratory virus. He now has a feeding tube in as he has an unsafe swallow and he will eventually need oxygen full time. Jordan has took it all in his stride and he is just amazing with everything he has been through. Jordan’s development won’t really progress any further and will eventually regress. Jordan is such a loving, smiley, placid and very chilled baby. Jordan loves to chill with his favourite tv shows like dancing fruits and loo loo kids. He also loves music and his sensory lights. Jordan loves when his older brother and sisters come to see him his little face just lights up every time they walk in the room. Jordan is very sociable and enjoys meeting all family, friends and anyone else he comes in contact with. We know and understand the doctors can’t do anything to help Jordan all we want to do now is make all the memories we can with Jordan. We want to do do things like take him on holiday. Day trips out with family and friends. Making memory keep sakes, have some nice photos taken with his brother and sisters. Everything we do or anywhere we go now is so special to us. Every minute or everyday is precious time we have with our beautiful baby boy.