Where to start?

Where to start? This journey started in June 2015. It was a Friday night and I was heavily pregnant. My contractions started. I got up, knowing that it should take some time before things got moving, so I decided to watch a bit of telly. Ha! Underestimation of the century. To cut a long story short, her highness Freya Oluwakemi was born 140 hours later, via an emergency c-section. True to her style she would not come out until there was a team of doctors waiting for her. And good thing there was, as she needed two rounds of chest compressions before being whisked away.

Nine months later I sit at Great Ormond Street Hospital Paediatric Intensive Care Unit, writing this. She has been diagnosed with an extremely rare life threatening syndrome called cerebrocostomandibular syndrome (CCMS). There are less than 100 cases in the world and it cannot even be diagnosed in Europe – Freya had her DNA sequenced in Canada for diagnosis. It has a 56% mortality rate. You can read about it more at: http://rarediseases.org/rare-diseases/cerebrocostomandibular-syndrome/

So what does CCMS mean for Freya?  She has a small jaw (micrognathia) and a deformed ribcage causing her lungs to be a lot smaller than usual. She is under the care of seven paediatric consultants and three surgeons. She has had a tracheostomy. She’s been to four hospitals and bluelighted across London more times that I like to remember. We are currently enjoying her third PICU admission…since Christmas. She is due a jaw distraction and gastrostomy. She may need a chest expansion when she gets bigger.

There is no cure to CCMS – they can try to help her by various operations, but mainly we just need to help our little princess grow.  The first five years are supposed to be the most difficult and if she gets through those it should all get easier. In the meantime we know any day she might have an acute respiratory deterioration and not make it. We are stuck between hospitals and highly medicalised life at home with oxygen concentrators, feeding pumps, tracheostomy kits and various professionals coming in and out of our house.

Why this blog? For a while I have wanted to start some sort of a social media presence for Freya.  The reasons are many. I know her highness has many loyal followers around the globe.  She has an amazing wardrobe. A lot of time I am crap at writing emails and keeping in touch – this way I can keep more of you updated than I could by normal means of communication. And also because the system put in place to help out chronically ill and/or disabled children in this country is a DISGRACE.  So I want to raise awareness, campaign, vent. I will, also from time to time, post fundraising links for organisations and causes we would like to see be supported.

So, Freya’s facebook page  (Team Freya) is basically for keeping you guys updated about where we are, what she is wearing and our day-to-day adventures. This blog has a bit more of a grown-up content of me describing the ins and outs of being a parent to a special needs kiddo. Basically it’s me ranting, though I will try to give credit when it is due.  You can also follow me on twitter @elnupps.

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