It`s a common misconception that having XP simply means keeping out of direct sunlight and staying in the shade. In actual fact UV is present in all daylight hours regardless of the temperature, cloud cover and weather, so even on the darkest, dullest and wettest days UV is there. Therefore in order for Eddison to stay safe outdoors he must be fully `protected` for every minute of outside time unless in the hours of darkness when UV is no longer present.
`Protection` for Eddison means that every, and we mean every, millimetre of skin needs to be blocked from the light. This means appropriate, heavy weave of special (and very expensive) UV fabric clothing which includes gloves, in addition to a full face visor, which is made from combining a UV proof hat with neck protecting tail and UV blocking clear plastic face shield. Due to Eddison`s age (being a typical toddler) and with only fine baby hair the hat is doubled up with a balaclava underneath to allow a secondary line of defence to his head and ears should his hat get knocked off when he is toddling around or should he decide to whip it off when he has had enough!
Unbelievably, there is more……under all of this protective clothing Eddison is required to wear SPF 50+ sunscreen which needs to be applied 2 hourly, or more if he is sweating etc.
And that`s just the outside world!!! Danger is still present inside. UV travels through windows, rendering most indoor environments with windows unsafe. Furthermore, UV is emitted by many sources of artificial lighting. While by no means exhausting, this includes low energy bulbs, over 40 watt incandescent bulbs, halogen, halide, florescent and the list goes on. So consider for one moment all the places you visit with windows and one or more of the above forms of indoor lighting…….
Like us your list probably includes some of the following:
– Shops, (including clothes shops, fitting rooms, shoe shops etc),
– Public Toilets (baby change rooms),
– Hair dressers,
– Community Centres,
– Village Halls,
– Restaurants, Cafes, Pubs, Bars,
– Service Stations,
– Bowling Alley,
– Children`s Play areas,
– Leisure Centres,
– Swimming Pools,
– Airports, train stations, coaches, taxi’s; and even
– Friends and Family`s houses and cars.
Now try and plan a safe and enjoyable family day out or weekly activity, such as toddler group, sport activity or even cubs!!!
For Eddison the reality of this is that indoor play opportunities are highly restricted and safe outdoor experiences are limited to after dark (only really achievable between October and February due to toddler bedtime) and to times of the day when the temperatures are low enough the he doesn’t over heat (in spring and summer this is really before 9.00am and sometimes 8.00am in midsummer).
The rest of the time, Eddison’s young world will be confined to our home, where we have film applied to our windows making it safe and air conditioning to keep us all cool (windows and doors cannot be opened due to UV penetration).
Eddison will never in daylight hours be able to walk bare foot on grass, or in the sea, play naked in a paddling pool or run his bare hands through sand in a sandpit. He won’t be able to feel soil or touch flowers in a garden or feel bark on a tree. Imagine he will NEVER feel the warm sun on his exposed face or rain and snow fall other than in the dark.
But with your help………this is what we are all striving to do for Eddison……..an Indoor Garden:
This room will be built as an extension to our home where we will create a safe space where Eddison can experience the sensory and play opportunities of other boys his age. This space has been designed to allow flexibility to grow with Eddison’s changing needs, in the future, for our teenage Eddison it will become a place where he can spend time with friends and where we can nurture activities and talents that he may not be able to pursue elsewhere, (such as music, art) which can provide him with an outlet when confined inside.
The room has been designed with maximum views across our garden so that Eddison can remain connected to the outside world and with his brother when they are separated by temperature. The room will be fully air conditioned to remain conmfrtable on even the hottest days when windows are sealed shut. It will have an artificial grass carpet and wet style floor that can be hosed down. This will enable us to have a paddling pool and sand pit where he can fully experience the joys of mess! We plan to make mobile planters which can be brought inside so that he can grown and water plants inside and then watch them outside as they grow, only to be brought back in for him to tend his garden. There will be an exposed structure to hang a swing and room for a slide, wendy house and other soft play and sensory equipment. At high level we plan to build him is own `den` with ladder access for unseen mischief and to help foster his active side.
To combat Eddison’s many restrictions this room will give Eddison space and facilities to help him develop and experience many things we all take for granted and to give him a place where he can be stimulated during the most challenging and restrictive periods of each year.
And the good news is we are almost there!!! We have a builder lined up, 2/3rds of the funds secured and with continued support hope to be able to start this spring in time for completion ahead of summer.
We have a range of exciting events planned for the coming months to try and give it the final push to make it happen so please spread the word and get involved where you can.
Every pound contributed to date has been given with such love and support and we can’t tell you how much it means to us, and it’s incredible how far we have come and an amazing feat to even be able to say “we are nearly there” after only 9 months of fundraising!!