Medical Information

Jonathan's condition is not yet fully understood. A small team of doctors and researchers in Australia and overseas is working on his case and it appears that he suffers from a very rare mitochondrial disorder which affects  the chemical functions of cells in the body. As a result, his body is unable to cope with minute levels of most of the chemicals that surround us in our daily lives.

 

The first signs of his illness started appearing when Jonathan was an infant. Since then, his parents have been vital in managing his condition and providing him with a rich quality of life. There are few similar cases in the world and none are known to match the range of Jonathan's problems. Dealing with such a complex and potentially unique case means that finding a cure for his conditions is extremely difficult. The focus of Jonathan's doctors and his family at this stage is on stabilising his health and managing the situation in the best way possible.
 

 

The ways in which Jonathan's parents have managed his condition.

1.  Dietary restriction.
2.  Provision of purified air.
            a)  Ambient air
            b)  Dedicated breathing air
3.  Requirement of personal preparation before entering Jonathan's environment.
4.  Treatment of all things that enter Jonathan's environment.
5.  Attempts to control contamination of Jonathan's air by air from outside.
 

 The best ways of stabilising Jonathan's health have been established by trial and error over many years.  The present situation has therefore been arrived at over a long period of time and by a gradual process.

Jonathan's health began to show signs of stress after he was taken from the breast at 4 months of age.  By 9 months of age he had become extremely ill with gastrointestinal problems and by 20 months his maintenance of body temperature had also become a problem.  These health problems were to become increasingly worse and Jonathan's condition deteriorated as he lost weight and failed to thrive.  Two stays in hospital and many medical tests could not find the answer to what was causing his problems or how to manage the symptoms.

When Jonathan was 3.5 years it was established at the Royal Prince Alfred Allergy Clinic that Jonathan was severely intolerant to a wide range of ingested and inhaled chemicals.  With this diagnosis came the management guidelines, to avoid the chemicals that caused symptom onset or exacerbation.   Jonathan's health improved and he gained weight when these guidelines were followed.
 

1.  Dietary restriction.

Jonathan was most seriously affected when the problem chemicals were ingested as part of his food intake.  The problem chemicals in food were in some cases naturally occurring (e.g. salicylates and amines) while in other cases they were additives (e.g. preservatives and colourings).  Therefore to avoid ingestion of the problem chemicals Jonathan's diet was very limited and each additional food added was carefully monitored to establish if his body could tolerate it and in what quantities.  This was done under a dietician's supervision.
 
 

Currently Jonathan's diet is based on:

Rice, potatoes (only some varieties), garlic, eggs, some cuts of meat and pears.   Other foods, e.g. celery, cabbage, beans, peas, leeks and lettuce are added from time to time in small amounts. However, only produce grown organically and with an 'A' grade certification is used.
The oil in his diet is soya bean oil.
For many years this has been  specially produced for him by Meadow Lea Foods Limited.
The sugar in his diet is glucose in the form of glucose powder or 'Poly Joule' which is a tasteless glucose polymer produced by Sharpe Laboratories.

Return to:  The ways in which Jonathan's parents have managed his condition.
 
 

2.  Provision of purified air.

To limit Jonathan's exposure to air borne chemicals was more difficult to manage.   The home environment was progressively established to be free of the problem chemicals and large air purifying machines were installed using HEPA and activated carbon filters to cope with the chemical pollution that resulted from the infiltration of outside air into the home.   However, it proved to be a much more difficult task to protect Jonathan from the problem of air borne chemicals in the world outside the home.    Avoidance by not going to places like shopping centres and other areas where odours were high was not the desired solution.  It was better to find ways around the problem and for Jonathan to still be apart of the normal world.   Many  different approaches were employed in attempting to maximise Jonathan's health status and the normality of his childhood.

It was noted that problem air borne chemicals not only varied from place to place or time to time within the one place but more generally from season to season.  For example:  exhaust fumes involved in travelling were lessened by travelling at times when the number of vehicles on the road was at a minimum;  the odours from sunscreen and personal insect repellents were a summer problem but on the beach they were much less of a problem in the very late afternoon or early evening;  perfume from Jasmine and other highly perfumed flowers mainly occurred in spring;   Translating these examples into management strategies aimed at minimising Jonathan's exposure meant:   travelling where possible late at night;  going to the beach at sunset when most people had left;  asking the neighbours not to plant highly perfumed flowers on our common boundaries and not visiting places where the gardens were in full bloom.  However, there were many situations where management could not change the chemical exposure.  For example, shopping centres, concerts, ferry trips, fairs, airports and many other places it is important for children to go.  To manage these situations various types of personal air purification were progressively tried, commencing with a 3M activated carbon face mask, then a motorised Racal respirator (still using activated carbon), then using the carbon face mask under the visor of the Racal respirator.   A table-top electric air purifier (using activated carbon filters) was taken everywhere Jonathan went and small purifier was installed in the car as well.  (The table-top purifier was only effective while Jonathan stayed within 6 feet of its outlet and of course could only be used when there was access to a power point.)  Click here Family Photo Album to view family snaps showing these various adjustments.
 

It became apparent that winter was Jonathan's best season.  Health wise there was less problem from air borne chemicals and so his year became planned about winter as a time of bike riding, picnics, visiting and less use of the respirator.  Winter became both physically and mentally the respite season, a space in the year when Jonathan suffered less pain, would weight gain and recover and would enjoy much more of the normal pleasures of childhood with much less cost to his health.   In 1985 this was to radically change, and unfortunately it changed permanently.

In 1985 slow combustion stoves became a popular form of heating in the local area and over the years their numbers have increased.  Smoke pollution from solid fuel heating contains many chemical compounds which are highly injurious to Jonathan.  So Jonathan's best season, his respite season, became his worst season.  His parents increased the level of air purification in the home by purchasing more Mitsubishi machines, (previously they had sealed vents, windows and doors), they now installed an air curtain on each of the two external doors and finally ceased to use the back door making the front door the only external door in use.  They planted a rainforest to deflect the flow of local air in the hope of decreasing the concentration of the chemical compounds contained in it.  For a few years it seemed that their increased precautions might manage to stop the decline in Jonathan's health brought about by winters becoming so smoky and consequently dramatically bad for Jonathan's health.  The price of this was that Jonathan was more house bound.  However, when the source of the smoke was an adjacent property the problems to Jonathan escalated.  (This was because there was no dispersion to allow dilution of the harmful chemical compounds in the smoke.)   Jonathan's health deteriorated rapidly.   So despite all the adjustments in management the point had been reached where Jonathan's health was  severely compromised within his own home by the air borne chemicals infiltrating into the home from outside.   The re-circulatory system of air purification could not cope with the increased concentration  of chemical compounds entering the house from the air outside.

The only way to deal with this problem is to install an air purification system that provides the house with purified air at positive pressure - hence the leaks of air would be of purified air leaking out rather than of outside air leaking in.   The provision of such a positive pressure air purification system for Jonathan is a particular focus of the Foundation.

 

Current system of air purification:

  Air is purified at two levels for Jonathan

Note: Dedicated purified breathing air is continuous supplied to Jonathan 24 hours a day, 7 days a week.  This system is provided with a external generator back-up in case of electricity failure.
The major problem with air quality still comes from leaks of outside air into Jonathan's area.  At times of high local pollution, for example winter smoke pollution, the negative effects of this problem upon Jonathan's health status and quality of life are devastating.   The reactivity of air borne chemicals should be more easily accepted these days because of the vast amount of knowledge that has been accumulated on the effects of passive smoking.   As this knowledge has resulted in legislation to protect individuals from the potentially negative effects of one person's actions upon another, Jonathan's situation should be appreciated because it is conceptually similar.

The provision of the dedicated breathing air system has been an enormous help in giving Jonathan added protection from the chemicals in the outside air that infiltrates his environment.   However, this system was designed as a personal supply of ultra pure air and as such does not redress the problem of infiltration.  As a personal system it can only provide protection over a very limited area, a moveable but limited area.  Therefore, to enjoy the protection given by this system Jonathan's space within his home further contracts.   It should be noted that the dedicated breathing air system was not designed to be used in its present application.  It was designed as a mobile unit to be used when Jonathan left his home environment and as such was never expected to run 24 hours a day 365 days a year.   Unfortunately this continuous running must be expected to shorten the life of the system.  This use of the dedicated breathing system in the home is a stop-gap measure to give Jonathan additional protection over and above the ambient air purification system currently used until the positive pressure air purification system for the house can be installed.    Although the use of the breathing air system in this stop-gap capacity is extremely beneficial to Jonathan it is no substitute for the required positive pressure system for his home.
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3.  Requirement of personal preparation to enter Jonathan's environment.

 From the time of Jonathan's diagnosis of severe chemical intolerance people visiting the home, or people whom the family would visit, were requested not to use strong smelling personal products as these had been observed on numerous occasions to cause very noticeable negative reactions in Jonathan.  Close friends and family observed these reactions on numerous occasions and became progressively aware of the wide range of products that would be detrimental to Jonathan.  Gradually a list of problem products was constructed based on trial and error and observation.

After 1985, when winters became so bad for Jonathan, he lost his respite season and consequently his health deteriorated, it became increasing more important for people coming into Jonathan's environment to be extremely particular about what they brought in with them in the way of odours or infections.  Like all the various management strategies Jonathan's parents use to protect their son, the regime of personal preparation requirements have been induced gradually over a long period of time and based on close observation by them and the family friends.

Probably the most pertinent and severe example of the negative effect of body and clothing borne odours upon Jonathan's health was that of the chemicals his father brought home on his person from his work as an industrial chemist in the field of industrial coatings.  Kevin was a senior research and development chemist with a major paint company and had worked in the industry for 35 years and daily came into contact with a wide variety of hazardous chemicals. (Some of these chemicals were:  Aromatics [toluene, xylene], Glycol Ethers [ethylene glycol mono butyl ether], Formaldehyde Resins [melamine formaldehyde, urea formaldehyde, phenol formaldehyde], Isocyanate Resins.)

It was concluded that Jonathan was adversely affected by his father's contact with chemicals when it was observed, over several years, that by the end of his father's annual leave (a months duration) Jonathan's health had improved only to very rapidly deteriorate when his father returned to work.  It was observed that the improvement in Jonathan's health status, in association with his father's holidays, was gradual but his deterioration upon Kevin's return to work was, in comparison, very rapid.   It took several years of observation before the association between Kevin's profession and Jonathan's health status was realised.  Then followed several years of trying to develop strategies to minimise the effect of Kevin's exposure to the chemicals on Jonathan's health.  As Kevin's showering and changing his clothes before coming home did not solve the observed problem with Jonathan, we concluded that Kevin was carrying residues of the chemicals within his body and breathing and sweating them out while at home.  Therefore the only way to solve the problem was for Kevin to move out of industrial chemistry.  In May, 1990 Kevin left the paint industry and re-trained as a high school maths teacher.  Kevin's total move away from chemicals by the complete change in profession has been an obvious benefit to Jonathan's health.

It is by the same process that all of us carry on our bodies the chemicals we use in the form of shampoos, perfumes, liniments, insect repellents, cigarettes, deodorants, hair spray and cosmetics, while our clothes carry the chemicals from washing powders, fabric softeners, ironing aid, dry cleaning fluid etc.  Our clothes also pick-up and carry the air borne chemicals from the environments through which we move.  The most easily understood example of this is the case of the clothes of the non-smoker taking the odour of cigarette smoke simply from being in a smokers' environment.

As Jonathan's health deteriorated it became more important to avoid any insult to his system as his ability to cope and recover was compromised, therefore the requirements of personal preparation to enter Jonathan's environment have become gradually formulated into a strict regime.  This is always fully explained to anyone prior to their preparing to come to visit Jonathan.   However, in preparation for the filming by RB films of 'The Boy in the Bubble' and 'Canary in the Mine' this was placed in a written form by the film director Laurel Cohn so as to ensure that the crew did not make any errors.  This written form of the requirements for personal preparation prior to entering Jonathan's environment can be seen by clicking here.

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 4.  Treatment of things entering Jonathan's environment.

 In the same way as our clothes and our bodies give off the chemicals that we have used on them so things give off the chemicals used in their manufacture.  Most of us are aware of the smell of a freshly printed newspaper and that a new book has an odour and that some books, usually the glossy paper volumes, smell more strongly than others.  Similarly new clothes smell as such, especially ones that are lavishly printed.  Articles made of plastic or vinyl have a distinctive odour which most of us can detect but are unconcerned about.  Another easily understood example is new furniture or articles made from wood - they give off their own characteristic odour.  In the case of some wooden items, like camphor chests, they are purchased partly for their characteristic smell.

Anything that is motorised or generates heat in its use is more likely to give off an odour, especially when it is new.  For example kitchen appliances, T.V. and video equipment and of course computers.  Even air purifying machines give off an odour from their motor when they are new.
 
Therefore, as the odours given off constitute an air borne chemical exposure problem to Jonathan all things have to go through various processes to allow them to out gas before they can be taken into Jonathan's environment.   Books and printed materials are placed fanned out over a constant strong stream flow of purified air in order to rid them of the odours of the new paper, the printers' ink and the glue of the binding.   As this process takes many months and so cases years an effort is made to use second hand books for Jonathan for this shortens the airing process.  Things like university text books are an extreme problem as it is often impossible to rid the book of odour in time for it to be useful.  In such instances the relevant pages have to be scanned in Jonathan's computer and used in this manner.  University notes can often be seen pegged on the clothes line as the sun and breeze accelerates the process of odour removal.  In other cases, if the book is not too odorous it can be sealed in a plastic bag or oven bag that has been previously deodorised.

In order for Jonathan to have independent choice of his T.V.  viewing the T.V. program for the week is slightly aired and then each page is individually sealed in a turkey sized oven bag.   Oven bags are very useful in the Wilson-Fuller household for sealing things that are otherwise too odorous to enter Jonathan's environment.

Anything that can be washed as part of the process of preparation for it to go into Jonathan's environment, will be washed, many many times.  This applied to the camera which was used in the making of the film.  It was completely dismantled, each part worked on separately to remove odour and then reassembled.

The most difficult things to make odour free are electrical and the most obvious of these is his computer.  When Jonathan gets a new computer he does not see it of at least two years.  The first two years of its life it spends in the airing room positioned in the flow path of several air purifying machines.  It is left running for months then goes through a process of being turned on and allowed to heat up and the turn off and allowed to cool down and so it goes on and on.  When the computer is as smell free as these machines get, to the normal person there would be no detectable odour, the computer is moved into his area and positioned away from his immediate air flow of ambient air to his bed but in a configuration of air purifiers that provide a curtain of purified air across the screen of the computer when it is in use and another large purifier to immediately draw air from the back of the computer into the intake of the air purifier.

Because of the problem of odour from the motors of new machines any new purifying machine spends at least the first two years of its life in the airing room and is only used outside of this area when it is completely odour free.

Owing to the need to remove the odour from new things Jonathan rarely is able to have gifts at the correct time.  Rather he sees them briefly and then they disappear until they are odour free.
 
Return to:  The ways in which Jonathan's parents have managed his condition.
 

5.  Attempts to control contamination of Jonathan's environment by air from outside.

Much of this has been explained in the previous sections:  the sealing of windows and air vents, the limiting of external doors in use to just the front door.  The front door is the furthermost removed from Jonathan's area and fitted with a Mitsubishi Air Curtain Type GK909CE which is automatically activated as soon as the door begins to open.   By limiting the area of the home in use for Jonathan the level of air purification is maximised and as such the probability of dealing with infiltration of chemicals from outside is also maximised.

Another method of air purification used is the placement of large mesh bags of zeolite around window frames and inframe sliding doors as these are also purify the air by adsorption - the same chemical attraction process as activated carbon.

The adjacent neighbours have been approached for co-operation and assistance, some are wonderfully supportive while others are ambivalent but the greatest problem arises from neighbour hostility.   Neighbour hostility comes down to a question of rights and responsibilities and in this area one is dependent upon understanding the gravity and uniqueness of the Wilson-Fuller's situation.

The remaining method of protection the Wilson-Fuller's have employed is the establishment of a rainforest.  This has been highly successful in deflecting local air flow but it is not able to totally protect the home from infiltration especially as the the house on one side is very close to the neighbour's fence leaving this side of the home completely exposed.  Click here  for more information about the rainforest.
 
Return to:  The ways in which Jonathan's parents have managed his condition.
 

 
 
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