Marigold’s story

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.

6 thoughts on “Marigold’s story

  1. Such a lovely blog. Shared by your brother Phil, who, like me, suffers from Ehlers-Danlos syndrome.

    Marigold’s story is beautifully written and inspires me even more to get out of my bed and finish the homemade gluten and lactose free lasagne I am making. My boys are 8 and 10 and have complicated aspects of EDS, joint hypermobility, dyspraxia, attachment disorder (caused by very complicated deliveries and my general disabilities).

    It took me until I was 37 to get a diagnosis of EDS. 2 weeks after this I was fired from my HR management job at Unilever.

    Now we have moved from Staines to Somerset and we have a fantastic time home-educating. We have done this since November 2012 when the boys were 8 and 5.

    The boys avoid all the issues of pain, digestive issues, injuries and accidents, fatigue and the difficukties of PE, handwriting, eating, environmental and emotional hypersensitivity that they suffered in school. I am not advocating this for Marigold, as she may have a wonderful life in school if her needs are fully met. It is just so lovely to be able to educate the boys automomously and witness them grow in so many ways.

    I believe my kids are ‘Crystal Children’.

    Recognising joy and gratitude, being present and open to receiving abundance, love and joy has changed my life. I feel that in your words too. Thank you for reminding me how precious my boys are.

    Marigold is soo beautiful.

    I would like to contribute towards something she needs. Please do email me.

    From my heart to yours, love, light and blessings, Grace xxx

    Liked by 1 person

  2. Thank-you so much for sharing this story, I have an almost 3 month old with low tone, no reason can be found, but may well be genetic, we have been told to just watch and see how he develops for now. I typed chromosome disorder into google and scared the life out of myself. I do not know yet if my son has a chromosome disorder, but reading this and seeing your beautiful little girl has made me less scared of what might be. He is a very engaging dear little baby and that won’t change even if I am told he has a difference in his chromosomes. As you say, life should be about being happy and I will just have to do my best to make him that. I had tears rolling down my face reading your blog, but happy tears as your love for your daughter really shines through. I hope I can be as good a mother as you, your kids are very lucky. xx

    Like

    • Thanks for your lovely words Lucy. It is so bewildering I know, to just be told to ‘wait and see’. There are lots of exercises you can do with your beautiful boy to help with low tone. Lots of tummy time propped up with a rolled up towel, give him lots of baby massages to wake the muscles up. Marigold was so hypotonic when she was a baby and now she is crawling everywhere, pulling herself up, standing and on the verge of walking. It has taken her a bit longer but she will get there! Good luck with your journey and always feel free to contact me for advice or support.

      Like

  3. This is such a labor of love for your dear Marigold. She is so beautiful and I am sure she gives you so much love. What a wonderful and courageous family. When you say there is goodness out of every adversity I believe this too. Thanks for sharing such a loving journey.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s