My daughter was diagnosed with a very rare genetic condition when she was a newborn. As it happens with many rare diseases, they can affect different areas like gross and minor motor skills, speech, cognitive, feeding… The same condition can be mild for some and severe for others, and what is usually uncertain whilst they are babies is what the real impact is going to be. At the time that I am writing this, my daughter has a global developmental delay.

As part of my daughter’s care, she frequently sees or has seen specialists on physiotherapy, occupational therapy, paediatrics, speech and language, and special needs education. She was referred to all of them as a baby, but the waiting times from the referral to the first appointments took a long time. I searched for resources online so I could help with her progression until these appointments took place and, although I found information, it was not in a structured way that I could easily use.

There are many things that I wish I had known then that I know now. Activities to help my daughter thrive and myself feel more comfortable with the uncertainty of not knowing what the future holds for her.

This is what this blog is about; about simple day to day exercises that can be done at home to help with the additional difficulties that some children face. I am not a specialist in any of the areas that my daughter does therapies for. I am just a mum who is trying to pass on what she learnt in case it can help anyone.

Anna is my extraordinary kid. A very happy little girl that in her short life has faced more challenges than a child would normally have to. She progresses slower than the typical child, but she does progress, which is what is important after all. Her achievements, even though they might seem small, bring us a lot of joy and they are highly celebrated. Yes, she has a global developmental delay, but in my eyes she is doing great. When she was diagnosed we had no idea how she was going to progress and if she was going to. Now we can see that she is, and we are so proud of her ❤️