Bespoke Garden room in Middlesborough
This gardenroom is For Leo, it has been a real pleasure to build this gardenroom and get to know the family. completed in 11 working days.
Leo's condition is Xeroderma Pigmentosum (XP) which is a very rare genetic condition. There's only 86 people in the UK with it. Its inherited meaning both Paul and I are carriers. There are seven strains of XP and Leo's is XP-G which is the rarest form - he's one of only 3 people in the UK with that strain. He can't be exposed any UV as his skin can't repair any damage that exposure could cause, his skin cancer risk is 10,000% higher than normal as a result. It essentially means he's allergic to daylight!! UV can pass through glass, so windows have to be covered with a species film called dermaguard (house and car are done so are safe for him), and some bulbs also emit UV, especially energy bulbs. Because of avoiding UV he suffers from low vitamin D and has to take a high dose daily or he gets aching bones and joints and reduced stamina. He has to be covered up whenever he goes outside, even walking from the car to the house, and wears special UV proof fabric or layers and factor 50 sunscreen. In the summer he sometimes suffers with heat exhaustion and can collapse as a result, so summer holidays are mostly spent indoors. The family often go nocturnal and take the kids to the park once UV hits zero, about 10pm! Erm.....he also can't get wet, because if his clothes get wet then UV can penetrate the fabric, and water also magnifies UV. Snow can also be tricky as it bounces the UV up so its coming from below too. So sledging is something we would do once it got dark too. Some strains of xp have a risk of neurological problems, and can lead to profound disability. Thankfully Leo hasn't shown any signs so we're optimistic, but as his strestreain is so rare they can not make any definite predictions. We go to London each year to guys and st Thomas hospital as they're the only hospital to specialise in XP. I think that about covers everything. The garden room will give him a whole new lease of life as he'll be able to play without his visor and gloves, and will actually be able to play out in the summer. I honestly can't thank you enough 🙂 xAnne Marie Saunders