I have decided at the last minute to run The Coventry Half Marathon to raise funds for the New Life charity, www.newlifecharity.co.uk., through sponsorship. This is the reason why;

My son, James, was born on Friday 1^st March 2002 at 13.45pm at 26.5 weeks gestation.  He weighed 1150g (2lb 8oz) and was born by Emergency Caesarean in his sac.  He was taken straight into another room where a team of specialist incubated him and once he was stabilized they moved him into Intensive Care for Premature Babies. A doctor explained that James would have a slim chance of survival.  He had undeveloped lungs and they had to administer two bags of surfactant (Animal Fats) to seal them. He was put straight onto a ventilator to help him breathe. I was unable to see him, but Jon went and had a quick look to confirm that he was breathing.

In the night I felt something was wrong and begged the nurses to allow me to go and see him.  They said that if I could get into a wheelchair they would take me down to see him. I ignored the pain and got into that wheelchair. My first sighting of James was that he was only just bigger that my hand, his eyes were sealed shut, he had fine hair all over his body, tubes everywhere, alarms going of all the time and they explained that they were struggling to control his oxygen levels and that it was early days and we needed to take every hour as it came. He was too poorly to be held.  

 

Due to the bleed, his ventricles’ were damaged which meant Cerebro-spinal fluid (CSF) had nowhere to be absorbed. The CSF normally flows through narrow pathways from one ventricle to the next, then out over the outside of the brain and down the spinal cord to be absorbed into the bloodstream and re-circulate. The amount of fluid and the pressures within the head are normally kept within a fairly narrow range.

James’s head was swelling. The fluid was not going anywhere and the side effects were heart problems and the threat of Optic Nerve Damage. James was too small, and could not have an operation until he was 5lb in weight. So, on a regular basis they had to lumbar punch his head, without anaesthetic, to relieve the pressure.  This they did regularly until he had to have an emergency operation at Birmingham Children’s Hospital to insert a Ventricular Shunt to help control his head pressure.  His diagnosis was Hydrocephalus and Optic Nerve Damage due to the high pressure before his operation.

For eight weeks leading up to his operation he hardly moved, he was always sleeping and always looked so weak. Afterwards, we had a different baby. He was alert and was able to start feeding slowly from a bottle. When he cried for the 1^st time, we were amazed! His colouring was fantastic and the VP Shunt was working. He was in hospital for 13 weeks and we pushed the doctors to allow us home.

 

For the 13 weeks James was in the hospital, we were there early morning and they use to kick us out because there was no facility to stop with James, even though sometimes when he was really poorly we just sat with him all night on a stool.

 

 

He slowly reached his milestones, sitting up at 18 months, walking at 3.6 years. He was diagnosed with Right Hemiplegia affecting both legs, Optic Nerve Atrophy and Chronic Lung Disease. He has some visual problems but he is defiately not blind.

 

The Special Care Consultant was amazed with his progress and many appointments later he would state that for the 13 weeks James was in Special Care, he felt like he was being summoned (Mostly everyday) and you can guess that was from me. He was a lovely Consultant who really respected us and when we bump into him by chance at the hospital he stops and talks. He loves the fact that the text book was wrong.

 

James started an enhanced Pre-School and his confidence grew.  He is so ambitious and cheerful, a happy soul and he was determined to run. We were advised to send James to mainstream school.  He started reception and he managed, losing only 2 weeks in 12 months due to chicken pox.

The start of Key Stage 1(2007), he started to have bad seizures and really severe headaches and he was in and out of hospital every 3 weeks. Finally he had to have a valve replacement for his VP Shunt.  Afterwards he was still unwell, with severe headaches and seizures. The new VP Shunt was working too efficiently and starting to over drain.

 

 In January 2008 James’s bridging vein came away from the wall and James suffered an Acute Subdural Haematoma, which was agitating a part of the left hand side of the brain. He was extremely poorly, had a massive seizure and ended up yet again in Birmingham Children’s Hospital. The Consultants took a conservative approach and waited for the bleed to stop and finally dissolve after a few months. Meanwhile he had another VP Shunt revision, including the tubing around his body; they altered the valve system for a higher resistance and an insertion of an antisiphon device to stop his shunt over draining. It was noted that his mobility and weakness again has deteriorated.

James had also been diagnosed with Symptomatic Focal Epilepsy which continues to be under ongoing investigation.

James, on a regular basis, is having episodes, with the right side of his face dropping and his right hand increasing in tone, nausea, pale and head pain. This can affect his balance, concentration, hearing, orientation and he becomes confused and agitated. 

Even though James has ongoing health issues and contracted the dreaded swine flu he returned to school in September 2009. His mobility is physically challenging, especially regarding his medication for Epilepsy as this slows down the brain, and he demonstrates extreme tiredness.  Despite this he is always smiling, he is polite and very cheeky. His peers are very supportive and helpful at school.

Throughout the years we have struggled to get hold of the right equipment for James. Some of his equipment is outdated and when you investigate different products, it is all about budgets. Families like us have to approach charities to enable us to get the right equipment to fit our children’s needs.

The Snowball Charity has funded a standing frame walker (£1,000 approx), 2 x banbac chairs (£500 each) one we use at school, and a car seat (£600). The Beckham’s Charity funded a tri-cycle, because he could not balance on an ordinary bike. I will never forget the day he was being measured for a tri-cycle, he rode it through the corridors of Coventry & Warwickshire Hospital where the Physio & OT department are based, and he did not want to get off it.

 

Our main costs are James’s hand splints. The NHS will not fund Lycra Hand Splinting and the rigid splinting they offer does not suit James’s needs, because his tone can be different everyday due to his Symptomatic Focal Epilepsy.

Last year Allesley Festival Committee contributed £300 to www.newlifecharity.co.uk. And New Life funded £1,400 approx for James’ Dynamic Lycra hand splints. Unfortunately these need replacing approximately every 12mths, and his are due for replacements in September 2010.

His Dynamic Lycra Hand Splints are a therapeutic device designed to achieve specific goals, we have noticed that they have improved his right hand and arm posture. Sensory awareness of his arm and hand, and he is even using his right arm to help him with everyday things. He did mention the other day do “Can I not wear my hand splints because I want to hear my hands clap together, and when I have my splints on the material stops this,” so I have agreed that the odd times he is allowed not to wear them.

That is why I have decided to run the Coventry Half Marathon, to help raise money for this charity, which will support families like us to receive the best possible equipments for our children.

We are so proud of James who is now 8 years old, he has overcome so many obstacles and he is such a fighter.

We would like to thank all his Consultants, Nurses especially at Birmingham Children’s Hospital, all the services departments, our close friends, friends, family and you for reading and hopefully supporting this charity www.newlifecharity.co.uk

 

Finally a big Thank You to his class mates who support and help him throughout the day at school 

Love The Stanley Family xxx

 

Thank You for your support, I have completed my first Half Marathon 01:56:55, so far with sponsorship forms  & Just Giving Donations I have raised £448.....THANK YOU xxx

 

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