Pretty in Pink . . . Aine's Journey

Take a look at today's Blipfoto picture and you'll see a smiling, beautiful little girl decked out in girly 'Pink' from her clothes to her ribbons and trendy glasses. Couldn't you just hug her like your own? This Kiltwalkers is Aine McDermott, from Penicuik and she is 5 years old.

Now take another look at the picture, and don't look at Aine.

Look at her surroundings. Do you notice the stethoscope dangling in the right of the picture? or the multitude of wires and tubes? or perhaps the hospital bed in the background?

The picture, taken in Edinburgh Sick Kids Hospital, has been Aine's home since 28th December 2012 and will continue to be her home until December 2013 at the earliest all because Aine has Congenital Central Hypoventilation Syndrome.
(CCHS).

CCHS is a rare disorder of the central nervous system where the automatic control of breathing is absent or impaired. A CCHS patient's respiratory response to low oxygen levels or high CO2 is, sluggish when awake and absent to varying degrees during sleep or illness.

A person with CCHS will require ventilation for the rest of their lives. Some for 24 hours a day, others only during sleep or illness. Ventilation is generally provided via a tracheostomy or facial mask.

There are currently around 60-80 cases of CCHS in the UK and approximately 800 cases worldwide. As CCHS is such a rare syndrome, there is very little research or support available for families and sufferers.

Leah, Aine's Mum, first noticed something wrong with Leah on Boxing Day last year as Aine wasn't her bright bubbly self. Rather than play with her new pink pram, she would rather stay in bed and barely ate anything, managing just a few Coca Pops.

Leah's motherly instincts kicked in so not satisfied with the GP's diagnosis, she took things into her own hands and headed to Edinburgh Sick Kids Hospital.

It was just as well she did, as within minutes of arriving Aine had turned blue and was immediately taken to resuscitation where 10 medics attended her.

She was very ill, with her oxygen saturation levels sitting at 60% so had to be intubated, which meant shoving a tube down her throat to help her breath and attached to a life support machine as they fought to bring Aine's oxygen levels up.

Initial diagnosis showed Aine had a partially collapsed lung, but apart from that, they had no idea what was wrong and so began Aine's journey.

Aine spent 3 weeks in PICU (Pediatric Intensive Care Unit), which as you can imagine was a very scary time for her family. She was very ill and the Consultants simply didn't know what was wrong with her.

Once they had stabilised Aine, she was moved from PICU to High Dependency and finally Ward 1, where she was eventually diagnosed with Congenital Central Hypoventilation Syndrome in February.

This came as a massive shock to the family as their and Aine's lives would never be the same again. That's because Aine will have to sleep with a ventilator for the rest of her life and can't return home until a care package is in place along with an overnight carer.

Due to the time it takes to get the funding required in place, Leah has been advised Aine will not be home until Christmas 2013!!

So life in Aine's house continues to be busy and noisy, as you can imagine with four other children to look after who are Finn (11), Ruari (9), Conal (7) and Erin (2) and Leah continues to juggle everyone's life to make sure Aine is surrounded with as many family faces as possible while she remains in hospital.

However as hard as this is, Leah would have been completely lost during those first 3 weeks without the vital help and support provided by the Friends Foundation and PJ's loft.

During this period, Leah stayed in PJ's loft, which is a quiet retreat that provides a warm clean bed, shower and kitchen facilities and a place to go when you need some time to think.

It was a lifeline for her as it meant she never had to leave the hospital and could be contacted at any time if Aine become unstable, or simply sit and have a hot cup of tea and try to watch a bit of TV to have some "quite time".

This is why Leah, her family and friends are taking part in this year's Edinburgh Kiltwalk as they are raising funds for the Sick Kids Friends Foundation for all the great work they do on a daily basis.

It's fair to say everyone concerned cant's wait for Xmas this year and it's got nothing to do with Santa coming. They're looking forward to Xmas as hopefully that's when Aine will return home to be that cheeky smiled, One Direction obsessed funny Primary 1 girl that she was before!

You can follow Aine's Journey on Facebook by simply searching for "Aine's Journey"