Thanks for taking the time to visit my JustGiving page.

Haha where to start... After giving birth to Lily the first thing I pretty much said to Dave was 'im having another one alright' poor Dave just nodded and smiled. 18 months later we started trying for baby no2 after 6 Months I finally fell pregnant, but miscarried, not long after the same thing happened. A few months after that I fell pregnant again but only to suffer a missed-miscarrige. We had some tests done which confirmed I have a rare genetic disorder called 'robertsonion translocation of chromosome 13-22' which basically meant every time I fell pregnant there was a 50% chance I would misscarry or the baby be stillborn. I was heart broken, but carried on regardless. Finally I fell pregnant with Stan the man and was over the moon to finally be pregnant again with a baby that I could take home. We had all the tests done which confirmed Stanley was fine 😍 However at 7 months old I noticed that one of Stanley's legs was growing faster that the other (girth not length) and  mentioned this at a routine hospital appointment... The doctor casually told me that Stanley has a rare genetic condition called Hemihyperplasia and that he would need to be scanned every 12 -16 weeks as he is classed to be at an increased risk of childhood abdominal cancer. My world fell apart in that room. I didn't cry until later that day as it just hadn't kicked in what he had told me. I called back and was basically told that he had told me all he knew about the condition in the few minutes we had spoke. I was left feeling lost, empty, angry, sad, every emotional you can imagine. A genetics appointment confirmed the doctors diagnosis. After moths of research I found a specialist in Cambridge who was willing to let Stanley take part in a segmental overgrowth study. Unfortunately we didn't get the answers we were looking for, but the doctors and nurses answered so many questions that we had and really helped us put things into perspective.

Stanley is still having his 12 - 16 weeks scans (until he turns 5) and touch wood every single scan has come back clear. I just wish I wasn't left feeling so alone and empty after the initial diagnosis and that there was someone I could have called who might have understood, or, I really don't know, something, anything! Having your child being diagnosed with any illness is just awful, but being diagnosed and then being told nothing was hard. I just want to raise some money to help other people who find themselves in a situation where all they want is answers and for more research into rare diseases

Thank you 

Xxx