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Through the Rare Project we introduce you to the people behind their rare conditions.

Hannah

Hannah loves life and is generally an extremely happy little girl.  She has a zest for life and radiates positivity and energy (LOTS of energy…and sometimes chaos!). 

She is probably most happy when she’s getting messy – messy play, messy eating, helping her mummy decorate the patio doors with whatever’s on her hands at the time - just messiness in general. 

She has a wonderful appetite and her most favourite food is broccoli, hence the title of her mum’s blog (www.mykidloves broccoli.wordpress.com)

Hannah loves exploring her surroundings and has a curious nature too.  For instance, give her a piece of chalk to draw with and she won’t just ‘mark make’, she’ll roll the chalk, stand it up, spin it round, feel it between her hands, taste it, throw it and she’ll find a whole host of other things to do with it too. 

Hannah is diagnosed with Cornelia de Lange Syndrome.

She also has a number of other conditions which are more than likely associated with her syndrome:  A bilateral SVC (heart defect), Cleft Palate, small hands and feet, fixed flexion contractures of the elbows, Pierre Robin Sequence, moderate hearing loss, global developmental delay and learning difficulties.

Hannah is significantly smaller in stature than an average child.  Whilst she’s around the size of a petite 4 year old, her physical strength is immense…as is her willpower!  Hannah is non-verbal, has limited means of effective communication, sensory processing disorder, she displays some autistic type behaviours.  Hannah is a sensory seeker.

Hannah was initially fed by NG tube as she had no gag reflex.  Then, in 2010, she had an operation to repair her cleft.  The surgery apparently went well, however, shortly after being returned to her hospital bed, she had a post-operative bleed, choked on her own blood and her heart stopped beating. 

That memory, of seeing your child die right before your eyes, is one that will stay with us forever.  Hannah was precious even before she was born, but she’s even more precious now…and we now have first-hand experience of the fragility of life and how it can be taken away from us any second.

Hannah’s syndrome affects most aspects of her life; from her mobility to the way she perceives the world and as a result, this subsequently impacts on her parents’ life too because Hannah is totally dependent on an adult for all her needs and needs to be supervised at all times – especially as she likes to put anything and everything in her mouth and has no concept of her own or others safety.

Despite her being non-verbal, significantly developmentally delayed and, at times, preferring to be in her own world, we really feel blessed that Hannah is accepted just the way she is by her friends. 

Children, in general, but not all, are very accepting and accommodating.  Sadly, this isn’t always the case about adults.  When we’re out and about with Hannah, we come across all kinds of people – lovely ones who’ll speak to Hannah even if she can’t respond, who’ll ask in as nice a way as they can what she’s diagnosed with and how that impacts on her or the ones who smile, genuinely smile, as they’re simply walking past us.   The genuine smilers get me every time and often leave a lump in my throat! 

Sadly though, there are people out there who seem to lack any empathy or understanding whatsoever:  the ones who walk in front of Hannah’s wheelchair or swing their bags at her face level, the ones who leave me struggling to get through a door (the list is endless).  But, for me, the starers are the worst.  On good days, I’ll ignore it and forgive their ignorance, on not so good days I may feel the need to stare back. 

Cornelia de Lange syndrome is a rare, genetic syndrome which, statistics suggest, affects 1 in 40,000 to 1 in 100,000 live births (apparently, that’s around 100 times rarer than Down Syndrome).  The syndrome was only discovered officially in the early part of the 20th century. 

“I want to let other families, just starting out on their own journeys, who’re dealing with the devastating blow of a new, life changing diagnosis that there CAN be life after this diagnosis….and our children, Ceridwen’s photographs and the Rare Project are unquestionably proof of that.” 

“My wish, is that Hannah is seen as a little girl FIRST.  Her disabilities affect her every day and there’s no getting away from that fact, but they most certainly don’t define her – she’s not a medical diagnosis…she’s Hannah”

You can read about some of the other people taking part in the Rare Project by clicking here.

You can read more of Hannah’s journey so far on her mum’s blog:  https://mykidlovesbroccoli.wordpress.com/hannahs-journey/