***MPS Awareness Day***
MPS Awareness Day aims to raise awareness of the rare, genetic mucopolysaccharidoses (MPS) diseases. On this day, we support all the children and adults who suffer from MPS and ML by highlighting the disease and we remember those who have passed from it.
Each year in May, Servisources parent company, Cpl, turn BLUE for MPS Awareness Day. The idea is to wear something blue to create awareness of colleague Libby Kelly’s young son Max who suffers from MPS Disease. Last Friday 19th May, staff in Servisource wore something blue in support of Max and those with MPS. The aim was to create awareness in the hope of instigating research and cures.
Servisource Staff turning blue for MPS Awareness Day
“Max was diagnosed with the rare, progressive degenerative disease MPS (specifically in his case Hunter Syndrome , one of the MPS diseases) when he was just a year old. MPS is a family of 7 diseases which cause progressive damage throughout the body, including the heart, bones, joints, respiratory system, brain and central nervous system. It is a very serious and ultimately fatal disease with most MPS sufferers not reaching their teenage years. Each week Max undergoes a 5 hour IV infusion of a synthetic enzyme which helps to ameliorate some aspects of the disease but it is not a cure. He is doing well right now, however, endures multiple procedures, tests, operations and hospital appointments to help manage the course of the disease. A cure is desperately needed but as the condition is so rare, there is little research focused on the disease. Libby continues to raise awareness in the hope that it will lead to increased interest and knowledge about the disease and ultimately a cure”.
For more information on MPS Disease or MPS Awareness Day visit: https://www.mpsday.com/#/
At dinner last night a tarantula crawled out and walked across the wall. They say that they wont bite you if you don’t annoy them and as Billy Connolly says ‘who gets up in the morning and says ‘I think I’ll go out and annoy that feckin spider today’. I leave well enough alone.
bit of path to do and for the first time there will be a paved road on the island. Its hard to believe that on the island that there are no roads. People get about by motorbike or what I called a ‘Honkey’ which is a cross between a horse and a donkey.
Tonight we are going to walk back to the place we are staying, its about 12k and we have to go on whats known as ‘Route National 1’ which turns out to be a dirt track that runs east west across the length of the island. There isn’t a square foot of tarmac on this island! We head off up the hill called the citadel and stop at Ailish’s house, which is a one bedroomed square house overlooking the western tip of the island and has breath-taking views.
We continue down the path and pass a thatched home with an outside oven that Ailish says is the local bakery. All along the track there are people outside their houses washing clothes and planting trees and crops, each family has a small holding and the first thing you notice is that there is no running water and no electricity. Each village has a communal well and a solar powered lamp post where the locals can charge their mobile phones.
The boat trip this morning is nice and cool, It is still 28 degrees at night in high humidity. Everyone is up early this morning and rearing to go. I pack some of the gifts that we brought and bring them along, we have crayons and chalkfor the kids at the school. Today we are putting a door into an opening to create a new office for the manager of the orphanage. My first job is to take some shelves off the wall, behind one of them there is a family of cockroaches living! These are not your average European types but big brown Caribbean flying roaches. My trusty assistant John Boyle uses his big Mayo boot and squashes them.
are making really good progress and they are now starting to paint the playground area in bright colours. The kids are looking on in great anticipation. Up to now they had no toys and this will be something really unique for them. My buddy John Boyle is called away to get a Massey Ferguson 35 running. I don’t know how he does it but with little or nothing by way of parts or tools he gets it firing within a couple of hours!
After my evening swim we go back to the bar and the Haven girls have set up a pub quiz for us during which I get to sample some of the local Haitian rum. Its delicious with coke or ginger ale or lemonade for that matter! I will have no problem sleeping tonight!