Devon dad runs half marathons for little hero
A North Tawton man is running four half marathons in 6 months to raise money for Ronald McDonald House in Bristol, a charity very close to his heart.
Alana Cook & Luke Compton of North Tawton, met while both working at the local company Gregory Distribution Limited (GDL). On Tuesday 12th November 2013 at 18:05, Luke Compton and Alana Cook’s world changed forever. Kaleb Jason Peter Compton was born at Exeter’s Centre for Womens Health, weighting just 4lb 9oz.
The first six weeks of Kaleb’s life were spent in the Neonatal Unit with two weeks in intensive care. Kaleb was so small, he was being assisted with his breathing, being fed and kept warm. Little did they know at this time, the journey their baby boy was about embark upon.
Luke and Alana decided to call him Kaleb, with a ‘K’ but from the moment he was born Luke always called him ‘Scrat’ which has stuck to this day and has become a Father/Son bond.
The couple were finally able to Kaleb home for the first time on 23rd December 2013. They didn’t tell anyone that they were home and surprised their delighted families on Christmas morning with the news that their gorgeous baby boy was finally home. However, over Christmas and New Year Kaleb struggled to put on weight and it became a struggle to get him to take any milk and to keep it down. At the beginning of February 2014, he had a feeding tube inserted.
On 1st April, Kaleb was diagnosed with a rare chromosome disorder called XQ28 duplication. This condition is extremely rare and there isn’t much information & the parents were guided to the ‘Unique’ website where they have since gained some knowledge of what to expect. The main problems in babies and children with their condition include failure to thrive and feeding difficulties, respiratory complications, delay in development and the condition is also life limiting.
Luke and Alana slowly started to see the challenges that lay ahead of them as individuals, a family and also parents to a child who wasn’t going to do everything by the book.
In April 2014, Kaleb was also diagnosed with pulmonary hypertension and between June and September the family spent their time travelling between Exeter and Bristol with illnesses such as Adenovirus, Rhinovirus and Bacterial Pneumonia. Kaleb finally returned home in September but with a permanent supply of oxygen to aid his breathing and his oxygen bottles are always close by. Between all the hospital stays, Kaleb had many out-patient appointments and the parents were left emotionally and physically drained.
Kaleb has spent most of his short life going in and out of either Bramble Children’s Ward at RD&E or Bristol Children’s Hospital. The time the family do get to spend at home is with a laid back, charming, happy, cheeky little 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 also takes his Gromit teddy everywhere he goes.
Luke said: “Kaleb is a true inspiration who 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. 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 November the family returned to Bristol again for a few days for Kaleb’s first operation which involved looking in depth at his heart and the pressure of the narrowed veins. Over the winter months Kaleb was kept indoors and in the warmth as much as possible because any cold or virus could mean weeks in hospital because his little body can’t cope with any infection.
In February this year the family returned to Bristol for a CT scan of his lungs, which resulted in four weeks in the intensive care unit (PICU) due to a few operations (lung biopsy & a gastrostomy) and a couple of weeks on the children’s ward before his discharge.
During this time in Bristol, Kaleb became so poorly his condition deteriorated and became life threatening and every second, minute and hour became so important. The amount of stress, worry and pain Luke and Alana felt as parents, who couldn’t do anything but keep a bedsit vigil. Their prayers were answered and Kaleb continued to fight and pulled through.
Luke and Alana found themselves in Bristol – a city they didn’t know well apart from the hospital, with a child who was very poorly and their home and family 120 miles away. This was where Ronald McDonald House offered them a sanctuary.
The Ronald McDonald House Bristol gives parents a room to stay in while their child is in hospital. This accommodation is free and without this, Luke and Alana would have had to find a hotel or bed and breakfast for the duration of their stay. During the eight weeks when they stayed in Ronald McDonald House, the young parents met families in the same situation as themselves from all over the South West & Wales. Everybody helped support each other through good, bad and difficult times. Everybody was in the same boat but maybe a few steps ahead or a few behind them but everybody had the same love for their poorly child and that is what the sprit of Ronald McDonald House is all about.
Currently Kaleb’s health is improved, with periodic trips in and out of Bramble Ward but nothing the family hasn’t dealt with before. They have been invited to spend a three day period at South West Children Hospice (Little Bridge House) where Luke and Alana can make memories with Kaleb that can live with them forever.
Luke said: “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."
Luke has always been keen on sport. He played football since he was little, (supporting Everton and Exeter City) and only stopped playing a few years ago. He loves playing squash and has always been a keen runner but always for fun, so after finding out about Ronald McDonald House Bristol and being treated so well there he decided he wanted to give something back and running was the answer.
Luke has used his running as an escape from everything going on. He has juggled his full time job doing 45 hours a week at Gregory Distribution, training as much as possible, worrying about Kaleb and also driving to whichever hospital he may be in or attending his out-patient appointments whether that is in Exeter or Bristol plus all the normal day to day things.
Luke has been asked many times if he’s mad for running all these half marathons, but his answer is simple "I’m not mad, I’m the Dad of a critically ill child."
They have watched their little boy go through so much during his life to date. Luke wants to raise as much money as possible for a charity that he feels doesn’t get the credit it deserves. He’s not raising the money for himself or even for Kaleb, but is doing it for all the parents who have used Ronald McDonald House or who may need the help of this amazing charity in the future. Without this wonderful charity, parents have an extra worry on their shoulders at the worst time imaginable. Ronald McDonald House Bristol relieves this stress and gives you the extra time to spend with your child.
Luke said: “Raising money for Ronald McDonald House is so important to myself and also the charity but I am passionate about raising awareness for this charity and getting their name known. We aren’t looking for pity or for anybody to feel sorry for us. We are so proud of Kaleb and we firmly feel we have been given him for a reason. I just want to help as many other families as possible who are going through the toughest time in their lives. They say every little boys hero is his Daddy but I can honestly say this Daddy’s hero is his little son!"
Luke completed the Plymouth Half Marathon on Sunday 19th April and runs the Torbay Half Marathon on Sunday 28th June, the Bristol Half Marathon on Sunday 13th September and finally Exeter’s Great West Run on Sunday 18th October.
If you wish to donate please visit www.justgiving.com/LComptonRMHBristol
