In June 2024, our daughter Poppy was diagnosed with a rare chromosome disorder. The disorder is called distal micro duplication of chromosome 16p11.2. Due to this being so rare our genetics team couldn’t give us much information on how this was going to affect our little girl. Once we got this diagnosis, all my focus was on finding information on this condition and i came across this wonderful charity called unique. Through other families stories and the research on their website and their support groups I no longer felt alone. Although this condition affects everybody in different ways it gave me an understanding of what we could expect for Poppy’s life. Currently this affects poppy with global development delay, speech and language delay, complex medical issues and Antenatally Poppy was found to have a short, bowed left femur which will require leg lengthening and alignment surgery which we believe was caused by her chromosome disorder. I wouldn’t have been able to get any of this information without this charity and all of the research depends on fundraising. The road ahead is still very unknown, but I know with having the support from unique it makes things a little bit easier.

Anyone who knows me knows that exercise and walking is not something I enjoy, but I decided to push myself out of my comfort zone and do the Wirral coastal walk to raise as much money as I can for this incredible charity. Everything I do is for you, Poppy. I hope to raise awareness for rare chromosome conditions and for all the families out there going through the unknown it’s a lonely road but together we can make a difference.