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Weʼre raising £3,544 to Help buy David a Big Sky Horizon light to alleviate his suffering resulting from visual disability and learning difficulties

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Story

David is 9 years old. During his short life, he has endured incomprehensible torment.

David was incapable of experiencing a pain free existence until he was 4½. He was not exposed to the many elements of learning opportunities afforded by a normal early childhood due to long periods in hospital.

He suffers from a Cerebral Visual Impairment (CVI), has a learning difficulty and a host of other problems. Despite this adversity, David is a happy little boy. Sadly, his difficulties can destroy this disposition in an instant!

CVI causes David’s inability to comprehend light changes during his normal day. Lack of natural light plays havoc with his senses and his circadian rhythm. He becomes so upset and distraught that he reverts to previous self-taught coping mechanisms. When these don’t work he self-harms, hits himself in the head until bruised and can attack, hit and bite us at home.

The only seemingly viable option to relieve David’s terror from winter darkness is a light source. So far the only relief we have managed to find for him, has been to drive David around country roads with the lights on full beam, in the hope he may realise his whole world has not simply disappeared.

During these sometimes thrice-nightly and early morning trips he will repeatedly hit himself in the head and smash his arm against the inside of the car door. It is heart-breaking and horrifying as parents to watch this unfold and the almost powerless feeling at being unable to stem the build-up of stress, anxiety and terror in David. David’s reactions are all too real as are his injuries.

Please can you help? Even the tiniest amount would be greatly appreciated.

For a Big Sky Horizon from Finnish company Light Cognitive, Helsinki the target is

£ 3543.93

I’ve included further information about David and Big Sky Horizon below.

Here’s hoping for David.

Thank you.

Bob

(David’s Dad)

About David

David was born at 28 weeks. His twin sibling did not survive. David contracted necrotising enterocolitis (NEC) requiring surgical removal of half of his large bowel, 15cm of his small bowel and his terminal ileum. Further operations necessitated David being in hospital for five months in high dependency intensive care. When he was five months, David underwent repeated intubations and extubations. After surgery whilst recovering in intensive care, he suffered a cardiac arrest during which David was hypoxic for 10 minutes with a low blood oxygen for the ensuing 30 minutes. A tracheostomy was performed to aid David’s breathing. Subsequent chronic lung disease meant David needed to be on continuous positive airway pressure for 14 months with multiple episodes of cyanosis. Additional episodes of NEC took place requiring further surgery.

David was transferred from Edinburgh Children’s Hospital to Glasgow Yorkhill Children’s hospital. Upon arrival he was put on oxygen which he remained on for the next two years. A fundoplication of David’s stomach was carried out for acid reflux. His ileostomy was reversed and throat reconstruction was carried out, requiring an additional three operations for granulation tissue within his throat. A tonsillectomy triggering severe pain for a number of weeks, was carried out when David was 3½. Tooth grinding dictated the removal of 15 teeth (between the ages of 4 and 5 years). David had poor health and very little sleep up until the age of 5. He is unable to tolerate: milk, soya, and gluten, fats (both animal and vegetable) except coconut oil. Owing to his short gut, David's diet now contains a very small amount of fibre in the form of fybrogel (gluten free version) added once a day to his drink. He also has a small amount of "VSL #3" probiotic added to all his drinks, to maintain stable bowel function. David was constantly fatigued until mid-2017, when it was found that small amounts of glucose relieved his profound exhaustion.

In February 2017, David was examined by a Medical Doctor and Professor of Visual Science, Professor Gordon Dutton:-

“He behaved as if I was not in the room. The visual field is the area over which we can see. David gave no evidence of any visual responses below his line of horizontal gaze, while looking straight ahead. Such lower visual field impairment is indicative of prior injury to the posterior parietal area of the brain on each side. However, his clarity of vision was 6/6, which is normal. Also his contrast sensitivity which is a measure of the ability to differentiate shades of grey was also normal at 2%. Throughout the time I spent with David, he only focussed and looked at whatever his gaze alighted upon. Careful observation of his eye movements showed that he would move his eyes quickly and accurately to the visual field testing target, as soon as it came into view, and follow this moving target for a short time before losing interest and looking elsewhere. This showed David’s eye movement system to be normal for rapid shifts in gaze (saccades) and the pursuit of a target. Yet, David’s spontaneous eye movement behaviour was unusual, he focussed on a target of interest, until losing interest, then changed his direction of gaze, to land on what appeared to be at random and without choice. This eye movement pattern is typical of the person who can only give focussed attention to a single entity, or simultanagnosia. His inability to move the eyes to naturally survey the scene (or apraxia of gaze) is the common accompanying eye movement pattern. In 2018 there was no change in any of the features reported above, except, owing to David being much more relaxed, assessment was much easier.”

All this is indicative of a brain injury caused by the lack of oxygen when David suffered a cardiac arrest (a condition common among adult stroke sufferers).

( www.cviscotland.org )

Professor Gordon Dutton who diagnosed CVI surmised David’s brain has sustained an unknown amount of damage to the rear portion responsible for processing vision. What David visually perceives is consequently unknown as he cannot tell us what he sees. We do know his vision and ability to cope with a multitude of environmental stimuli are massively reduced when he’s stressed. Factors such as noise, food intolerances and a wide range of elements that you and I take for granted serve to compound David’s anxiety. One of the most traumatic for David is the effect of his visual impairment and the darkness.

His whole approach to life and learning has changed thanks to his Mum working tirelessly to secure David a positive future. This is done through home-schooling and his PATH (Planning Alternative Tomorrows with Hope) to learning, social inclusion, friendship and happiness. His Mum extends this by implementing CVI strategies matched as best we can to how we feel his “brain sees”, to ensure he has access to all educational efforts. Recognition that David has cerebral visual impairment (CVI), probably the Balint syndrome variant, and implementation of targeted strategies matched to his visual requirements has been key in changing David’s life for the better. He is embarking on transitioning to the Royal Blind School in Edinburgh now that his confidence has returned as has a renewed desire to socialise and learn.

His Mum has suffered emotionally and physically when David has been unable to cope.

Similarly, David’s sister has had to endure his episodes which have affected her emotionally. She has witnessed her mother attacked and bitten and is conscious of the huge strain placed upon us all. She is sadly also only too aware of marriage problems emanating from this complicated dynamic. This is far too much stress and upset for an 11-year-old girl to have to withstand. We try to compensate for this by giving her the attention she needs when we can but the resulting pressure of family life often makes this is difficult.

From Chief Operating Officer, Light Cognitive, Finland:-

“The winter is indeed dark, especially up here in Finland, which is the main reason behind the inception of our products. As we put cold colour temperature content into our light spectrum, we can greatly increase the anti-SAD effectiveness at any given light intensity level. Or in other words, you get much more biological benefit out of the light without going to ridiculous levels of brightness.”

Big Sky Horizon lighting will bring familiar and beneficial natural light to David’s everyday life. Its design means it is easy to install on the wall like a painting and creates a horizon style effect that gives the impression of a natural environment. David can view every day – a beautiful morning, a clear sky or a stunning sunrise. When David was able to travel, he relished stunning foreign sunrises and sunsets. This light can give him back wellbeing, relief from his disabilities and the terror that winter darkness instils in him. It can restore his natural rhythm and massively reduce his confusion and pain.

David is a lovely little boy who deserves a chance - summers filled with adventure and the chance to test his own boundaries and winters in which he does not regress into fear and anxiety. The whole family at this point both desire and deserve to see him happy and free and obtain some relief from the unremitting trauma of watching him suffer.

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    Page last updated on: 11/20/2018 10:35 PM

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