About our family

Me: Mother, freelance marketing consultant, writer, on a unique journey. Campaigning for inclusion and awareness for disability rights. Contact on Twitter on @hburness.

Husband: Patient, loving, hard-working, husband and father. Proofreader of all  these  ramblings.

Our amazing eldest boy, H. Marigold’s brother, best friend, champion and therapist. It is hard to be the sibling of a child with complex needs and boy, does this little dude nail it!

Captivating, sweet-natured, golden-haired Marigold. Our unique little girl. Proving to the world that different is beautiful and that limits should never be set.

6 thoughts on “About our family

  1. Helen this is really beautifully written and so true about her unique energy. She is captivating because of her calmness and loveliness :). We love having her at nursery when she comes.


  2. We have just found out that our 6 month old daughter has a Genetic disorder so far all we know is that is extra on Chromosome number 3 and I have just sat and cried watching your story on 24 hours in A & E and how it all started was exactly how we got to find out something wasn’t quite right and after 3 months of in and out of hospital we still have a lot to learn but to know we are not alone is so very reassuring at such a vunarble time

    Marigold is just beautiful xx


    • Samantha, have you been put in contact with Unique, the rare chromosome disorder charity? They will be able to put you in touch with others who have similar duplications. We have a little 3q group and are in touch every week to support and help. Their website is http://www.rarechromo.co.uk, their secret FaceBook page is my lifeline!


  3. I have been in contact with Unique after your recommendation thank you so much as so far we have been left in the dark and alone in what feels like a lifetime of the unknown and now feel a little relieved that I have found a form of support for questions I may have

    Thank you so much for your response it is so very much appreciated

    Hope you and your beautiful family are doing well xx


  4. I read your story. My son has a physical disability (SB). Support groups make all the difference. Knowing that someone is always willing to answer my questions and provide recommendations has been comforting to me personally. Also Scope has come in handy when trying to find out what benefits we are eligible for.


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