Marigold was diagnosed at 3.5 months old with an “RCD” – a rare chromosome disorder. What Marigold has is, so far as we know, completely unique. There are no other cases that we know of someone with her exact mosaic duplication – 3q11 trisomy mosaicism. This means in some cells in her body, we don’t know how many exactly, she has a bit of extra genetic material. (For the scientists amongst you, it is the long arm of the 3rd chromosome that is duplicated in some cells.) Put very simply, this little bit of extra material is confusing for her brain – a bit like having a jigsaw with too many pieces. What does this mean exactly for Marigold? Well, we don’t know. Because what she has is unique, it is difficult to predict the future. She is delayed in aspects of her development currently and needs various therapies to help her along the way. But her mosiacism is just something she has, it does not define her or change the fact that she is simply an extremely happy, captivatingly beautiful and bright little girl, who lights up our lives more than we could ever imagine.
This is a blog to celebrate Marigold and her uniqueness; to help remind us that sometimes nothing good comes without a bit of a struggle and that there is beauty and goodness to be found in adversity. It is written with all the love in the world for my unique little girl Marigold, her big brother Harrison, my fantastic husband and with the hope of providing some comfort and support to other unique parents googling for stories of hope.
If you have a child with a unique or rare chromosome disorder, contact Unique, the Rare Chromosome Disorder Charity, for help, knowledge and support. http://www.rarechromo.co.uk