A FATHER from North Tawton is picking up his running shoes to show his gratitude for a charity that has helped his family through its most difficult times.

On Tuesday, November 12, 2013, Kaleb Compton was born to Alana Cook and Luke Compton at Exeter's Centre for Women Health, weighing 4 lbs 9 oz in an amazing, six-minute unexpected breach labour.

Following Kaleb's birth, the couple spent the first six weeks of parental life in the neonatal unit, two of those weeks in intensive care. Kaleb was so small he was being helped to breathe and kept warm in an environment designed to replicate the womb, as he was born 13 days early.

The couple finally got their son home for the first time on December 23.

They kept his arrival at home a secret until Christmas morning, surprising their family as a unique Christmas present.

Kaleb struggled to put on weight over the Christmas and New Year period and it became a constant struggle to get him to feed and keep milk down.

At the beginning of February 2014 he had a nasogastric tube placed into his stomach via his nose so the pressure was lifted from Alana and Luke and he was fed directly down the tube.

On April 1, 2014, Kaleb was diagnosed with an extremely rare chromosome disorder called XQ28 duplication.

Information on the disorder initially proved difficult to come by, but the main problems it causes are a failure to thrive and feeding difficulties, respiratory difficulties, developmental delay and life-limiting conditions.

Despite his illness, Kaleb soldiers on through life with happiness.

Luke, Kaleb's father, said: 'Kaleb has spent most of life in and out of either Bramble Children's Ward at Royal Devon and Exeter or Bristol Royal hospital for Children.

'At home, Kaleb is a laid back, charming, happy, cheeky chap who loves to play with Ozzy the Jack Russell, he also loves music, lights and bells — pretty much anything that makes a noise or lights up.

'Kaleb is also very fond of his Gromit teddy and takes him everywhere he goes.

'He is a true inspiration, he doesn't let anything bother him, he just accepts what has to be done and somehow just gets on with his little life.

'The world he lives in is such a happy place and a lesson we could all learn from.

'The fact he has many tubes or wires doesn't make him any different to any other child, we all still love him dearly, if not more.'

In April 2014 the couple also found out Kaleb has pulmonary hypertension, a condition in which the walls of the pulmonary arteries in the heart are thick and stiff, making it difficult for them to expand to allow more blood through.

During the following months Kaleb received treatment at Bristol's Royal Hospital for Children.

He has been back several times for treatments and operations including the fitting of a heart catheter, lung biopsy and gastrostomy.

When Kaleb has been at the children's hospital in Bristol, Luke and Alan have stayed in Ronald McDonald House, an independent charity providing home from home accommodation free of charge to the families of critically ill children receiving care at the Royal Hospital for Children.

Luke said that without Ronald McDonald House, they would have had to consider going home rather than staying in Bristol to be near to Kaleb.

'Coping with everything that has happened and continues to happen is the hardest thing I've ever had to deal with and I hope nobody ever has to go through half of what we have.

'Mentally, physically and emotionally it takes everything out of you and is draining and exhausting.

'The roller coaster of worry just doesn't go away as much as you try to hide it.

'Over the eight weeks we stayed in Ronald McDonald, we met families in the same situation as ourselves from all over the South West and Wales. Everybody helped support each other through good, bad and difficult times.

'Everybody was in the same boat, maybe a few steps ahead or a few behind, but everybody had the same love for their poorly child and that is what the sprit of Ronald McDonald and also PICU [Paediatric Intensive Care Unit] is about.'

To show his gratitude Luke has decided to run four half marathons in six months to raise money and awareness for Ronald McDonald House.

He completed the first of his four half marathons in April, completing the Plymouth Half Marathon in one hour and 57 minutes.

His next race is the Torbay Half Marathon on June 28 followed by Bristol Half Marathon on September 13 and the Great West Run on October 18.

Luke said he was running the races for all the parents who have used Ronald McDonald House and those who will need to in the future.

Luke said he used running as his escape from everything going on — it also gave him his own 'head space', so he could deal with everything, such as trying to hold down a full time job 45 hours a week, training as much as possible, worrying about Kaleb and then also driving to whichever hospital he may be in or attending appointments, whether they were in Exeter or Bristol.

All this in addition to the normal things life throws at the family on a general day-to-day basis.

Luke said: 'I've been asked many times if I'm mad for running all these half marathons and my answer is simple: I'm not mad, I'm the dad of a critically ill child.

'We have sat and watched our little boy go through so much over his little life to date.

' I have found so much drive and determination to make him proud and to realise we can all do something special if we put our minds to it.'