Grace's Story

ZippySuits is for Grace.

Grace is our beautiful daughter.  Grace was born with a rare genetic condition that goes by the name "DDX3X".  It's a mutation of a protein and was only discovered a few years ago.

Grace has always been a warrior! At 6 weeks old she had open heart surgery to fix a couple of holes in her heart (ASD & VSD).  Thankfully her surgery was a success and she has recovered fully.

However, a couple of years later we discovered she had a genetic condition which explained her developmental delays.

Grace is now 5 years old and is non-verbal, suffers from poor muscle tone development, is autistic, requires hand feeding 3 times a day and has irregular sleeping patterns.  

But despite all her challenges Grace is the cheekiest and happiest little girl.  She is also extremely cute.  She has a real sense of humour and recently started to say some words.

Her first words were... wait for it... "ice-cream", "more", "iPad", "more", "bubbles", "crackers"... and after a while we got "mummy" and "daddy".  More recently she has started to say "chocolate" and "chips".  She really knows the finer things in life.

Grace is at a critical period of her life where we, as parents, need to focus on her therapies to help maximise her development.  So recently Mum (Katie) gave up her full time job to focus on Grace, whilst Dad (Alex) continues to work full time in finance. 

ZippySuits has been set up for 2 reasons. 

Firstly, to give our family the flexibility and freedom to work around Grace's needs in order to maximise her potential.

Secondly, in the future we really hope we can give something back to the DDX3X community by contributing a percentage of profits for research donations as well as assistance to those families who are impacted by a child with DDX3X.  

We're going to have some fun with ZippySuits and hope you can join us along the way too!

Lots of Love,

Katie, Alex & Grace. 

xx