This picture doesn't quite paint a 1,000 words

They say a picture paints a thousand words. So look at this picture and what do you see?

(a) A happy little girl with a beaming smile?

(b) A happy little girl with a beaming smile, in her pink bedroom? or

(c) A happy little girl with a beaming smile, in her pink bedroom? holding onto her Mum as if her life depended on it?

If you think (b), you’d be right. However, did you spot the green ventilator hose on the right hand side of the picture? If you did, you’d know that (c) is the correct answer, as Aine’s life does depend on her Mum, family, ventilator and her care staff.

Back in March 2013, The Kiltwalk, Leah Forbes and her daughter Aine were complete strangers and if truth be told, as much as Aine and Leah have enriched everyone one associated with The Kiltwalk from staff to Kiltwalkers alike, I wish we were still strangers.

You see ‘strangers’, in my mind, would mean we’d never have heard of Congenital Central Hypo-ventilation Syndrome (CCHS), why?

Well that’s simple as it would mean Aine wouldn’t be one of approximately 60-80 people in the UK who suffer from it, or only one of 800 in the entire world.

That’s how rare CCHS is, which adds to Aine’s uniqueness in more ways than one.

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 while awake and to varying degrees absent 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. Lifesaving ventilation is provided via a tracheostomy or facial mask.

When you read the statistics, you soon realise how rare CCHS is. This goes someway to explaining why Aine spent the best part of a year in Edinburgh’s Sick Kids Hospital surrounded by hi tech medical equipment to keep her alive, while the medical team worked hard to first of all, diagnose Aine’s condition and then work out the long term prognosis and care plan for Aine, all of which took time.

I’m sure if you or I were Aila’s parents, we’d want to wrap her up in cotton wool and never let her out our sight, but as Leah points out, that’s no life for anybody.

Therefore, Aine goes to school, as she did before and has hardly missed a day since she has been back. She plays outside, as she did before, goes to her friend’s houses just as she used to before - she may have CCHS but it does not have her or her family.

Since Aine has been home life has been good, not normal because it will never be normal, but good. She settled back easily and quickly and seems to take everything in her stride. If you are wondering what “not normal” looks like, here are just a few of the things that are not quite “normal”.

Aine is one of five of Leah’s children, so to ensure she is in a fit state to look after them Aine has a care team who provide valuable overnight support, which means the family as a whole operates as normally as they can do.

Every evening at 9pm, one of Aine’s care team arrive to look after Aine during the night. They check her oxygen saturation levels, making sure she doesn’t get disconnected from the machine that pumps oxygen into her lungs as she sleeps, which is very easy to do if Aine rolls over in bed.

They stay until with her until 07:00, which means Leah is up at 06:30 every morning to discuss the events of the night before letting them go home.

Leah explained it took some getting used to after all the Care Staff are, in a sense, invading your privacy every evening by coming into your home and although you might be sleeping, you can always sense they are there.

Leah is therefore very grateful that Aine’s care team not only care for her, they adore her while managing to respect everyone’s privacy, as much as they can. It’s not ideal, however it’s now Aine and everyone else’s life and it’s so much better than what faced the family during the months Aine was in hospital

As you will have noted earlier, Aine leads as normal a life as she can do, which in her case means attending Edinburgh Sick Kids every 4 weeks to visit her consultant who makes sure everything is going to plan.

Additionally, Aine also attends speech therapy, physiotherapy and occupational therapy. She takes all this in her stride as children often do, only moaning if something new or out of the ordinary happens and a Sleep Study comes into that category and Aine is dreading it.

A sleep study might sound innocent enough, but it involves being strapped to machines all night, an ECG, ultrasound of her bowel, various other X-rays, blood tests, lung function test to name but a few, so not the most pleasantest experience.

Therefore, six months on from Aine finally coming home, we asked Leah how things were and here’s what she said.

“So far so good. As a family we strive to be as normal as we can - life is different for all of us but we all just know to take one day at a time and make the most of each day.

Although Aine’s brothers and sister adapted really well to Aine having to use a ventilator at nights or is unwell. Seeing their sister so poorly was a massive shock to my sons and in some ways, I think has made them appreciate each other more. Life is really very precious.

Things like holidays right now are not an option as there is no way we could afford to take a carer to look after Aine which we would have to fund.

Tommy, (Leah’s husband) and I very rarely get a night off, as all our baby-sitters have to be ventilator and paediatric life support trained. However we are very lucky because we have some very close friends and an amazing Gran and Papa who have taken this on, no questions asked - but we will never be able to up and go on the spur of the moment as everything we do has to be planned well in advance”.

Life, one year on is different. Aine is home and let’s hope things continue to improve and hopefully the family manage some holiday time at some point, they deserve it.

Life is also very different for Leah too as since we first met, Leah has become and always will be forever more a #kiltwalker

Team Aine came together last year and what started as a few friends and family, grew into an immovable force as people once reading of Aine’s Journey, joined forces and dedicated their time, effort and often their bodies to raise as much as possible for Team Aine.

When all the walks were completed, all the events finished and all the donations counted, Team Aine had raised a massive £12,500, half of which was given to The Edinburgh Sick Kids Friends Foundation, Team Aine’s chosen charity.

Leah nominated Edinburgh Sick Kids Friends Foundation, as without their help and support in the last year, things would have been pretty dire for Leah and her family and this year. Team Aine are ready to walk again and once more it’s for Edinburgh Sick Kids.

One of the things Leah recognised was the support the Friends Foundation provides for Mums and Dads who suddenly and often unexpectedly find themselves in the total care of the Sick Kids Hospital?

It can often start when they’re told “your child may not survive unless they’re taken, by helicopter, to Edinburgh Sick Kids Hospital, NOW!”

With no time to think or react, parents often arrive in Edinburgh with nothing but the clothes they have on, not knowing a single person and worrying about whether their child will survive.

Thankfully, due to the hard work and money raised through events like The Kiltwalk, the Friends Foundation can provide for such parents who haven’t had time to think about clean clothes or toothpaste, never mind accommodation.

The Friends Foundation also run a drop in centre close to the hospital that provides parents and family members a place to go for a cup of tea so they can escape the bubble of the hospital.

This may not sound or seem like much, however Leah can vouch first hand that it means so much when you’re isolated from your family.

The good news is that it only costs £3 to provide a parent with a clean bed for the night – Yes, £3 makes sure no Mum or Dad is left with nowhere to go which is what Team Aine’s and Kiltwalking is going to provide for this year.

There has already been a Team Aine Band Day, which in addition to being a brilliant day raised over £700.

Team Aine have walkers taking part in all of our Kiltwalk, including Machu Pichu in Peru, with Oor Leah taking part in all of them!!

Not to be outdone, Leah’s three sons are walking the Edinburgh 10K while her Mum is walking the Edinburgh Half Kiltwalk with other friends. Tommy and Leah’s Dad are on child looking after duties tomorrow, but Tommy has registered to take part in the 10k at Speyside with some other friends, so those red and yellow hats will, once again, be a familiar sight.

I’m going to finish the post Edinburgh event with some numbers, as I did pre Glasgow.

One of the figures I mentioned about Glasgow was that our 6,200 Kiltwalkers would collectively cover 144,000 miles, the equivalent of walking the earths circumference, 6 times!!

So, here’s Edinburgh’s statistic.

Team Aine have set themselves a target of raising £5,000 this year, which given they’re currently at £4,000 is one we think they’ll smash. If they achieve their target, which the Friends Foundation will receive 50% of, that will fund 833 of those £3 a night bed costs for the parent of a Sick Child. That’s the equivalent of almost three years of funding. Now that’s worth walking for.

If you see a Red and Yellow, or yellow and Red cap wearer tomorrow, you’ve found a Team Aine Kiltwalker, so make sure you say hello as you walk round with them.

If you want to sponsor Team Aine on their 2014 Kiltwalk Adventures you can do so here http://uk.virginmoneygiving.com/team/aine2014

See you all bright and early, tomorrow and don't worry about the weather forecast, we have poncho's for you.