Sewing my heart on my sleeve (or why I’m trying to raise £5,000 for Gorlin Syndrome before I do the #IceBucketChallenge)

You may have seen over the holidays the Ice Bucket Challenge doing the rounds raising money and awareness for Motor Neurone, but before you sigh and move on please carry on reading as I’m going to explain to you why the title is what it is. Once you’ve read PLEASE share. If you’ve come across this via WordPress click re blog.  If you’ve come across this via Twitter or Facebook then retweet and share. If you are a dear reader and have received this via email well forward this to everyone in your address book.  Why? I’m running out of time to raise £5,000. I have precisely less than 5 days till the end of September before my fundraising page expires.

I was challenged to do the Ice Bucket Challenge by Robyn, my middle Goddaughter , via Tim (her dad) and Sharon my Zumba instructor. However I decided to use this opportunity to raise awareness and money for Gorlin Syndrome. After discussing this with hubby £5,000 seemed a good figure to go for before a bucket of ice water gets poured over my head. So how much water is in the bucket. ……. well this amount.

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Yep I know not much. :(

Don’t get me wrong I appreciate all the donations so far but more would be great!

So why Gorlin Syndrome and what is it?

When I first started this blog I did casually mention that this is what hubby has but as time went on the blog became more about me and my craft, Gluten free finds and cookery so it disappeared. ……However Gorlin Syndrome didn’t.

Hubby (Howard) is a big part of my life after all I did say

For richer, for poorer
In sickness and in health

Howard and I met at University. He saw me on the first day of our first year. He said to his friend “That’s the girl I’m going to marry.” His friend said “She’s out of your league.”

However it took three years before we were introduced, even though he was friends with all my friends, and started going out.

I remember when Howard first told me that he had Gorlin Syndrome. We hadn’t been going out for long. He showed me a photo of a small group of people and some text explaining the illness.  He gave me time to think and to ask questions. ….Some of which were heartbreaking. ….

I went away and thought about things but I listened to my heart. I went out and got him a card. A tatty ted one that said the best thing about our relationship is you.

Gorlin Syndrome is a genetic illness but Howard is classed as a mutant as when he was conceived the fault occurred.  He is a fresh mutation.  This means any children that we have has a chance of inheriting the condition.

When he was born it was slightly obvious that he was different.  As part of the condition the bones and how they are formed are different.  The bones calcify and this presents itself in a variety of ways most obviously a larger head than normal. When he was about eight years old his dentist discovered a cyst in his jaw.  This was the first of many and when he was diagnosed with Gorlin Syndrome. However Howard didn’t know he had the illness till he was about sixteen.  Up till then he had been in and out of hospital and left school with very little qualifications. 

However he was not going to let that stop him. He studied hard and made it to University, despite numerous trips to hospital for various operations. He also graduated!

Another symptom of the condition is skin cancers.  They aren’t like other cancers as such so normal cancer treatment such as chemotherapy and radiotherapy is not used. These are removed by surgery.  This is invasive and causes disfigurement.  He has roughly three operations a year to remove them. To us its a minor thing as often he is back at work the same day. For others this would seem as a major thing. Occasionally he has to have time off work if they are on his face or head.

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There Howard has had stitches but occasionally he has to have skin grafts and staples.

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Yep those are staples and a bit of his humour.

Howard has a great sense of humour.  Often he wears it as a mask. I know now his moods and when his illness is getting him down. There have also been scary times like the times when I  thought he was going to die – when he had an infection,  another time when his stitches had burst and the blood wouldn’t stop….The time when he had a severe reaction to a spinal tap….Then there is the lump in his brain that is very slow growing (thank God) but there is nothing that can be done.

There is no cure to Gorlin Syndrome.  Suffers have to live with the condition everyday of their lives.  Those who love them and support them such as spouses,  family and friends help them through it.

Much research has been done. Many thanks goes to those suffers who acted as guinea pigs. More however needs to be done, to find a cure and better treatment.

For me I’ve said I’ll put a bucket full of iced water over my head for £5,000. To help me get there
http://www.everyclick.com/alsice

Unique Appearances and the Faithful

CityofLeedsRose:

God loves us no matter what we look like.

Originally posted on Operari Vitae:

I’m a 32 year old woman with very fair skin, hazel eyes, red and purple hair, and quite a few ear piercings (9 in fact). I have a tendency to stick out in a crowd and stuck out quite a bit before I started adding purple to my repertoire.  That all said I’ve actually toned down my outwardly appearance and retired a lip and nose piercing. 

So what does all this have to do with a blog on faith and life?

A lot actually…

As a junior in high school I found myself very harshly judged on my appearance in a church.  I was raised Southern Baptist in a small town.  I had, at that point, four piercings in my ears and had begun dying my hair a darker shade of red than it was naturally.  My conservative parents didn’t have a lot to say about it so believe me it was…

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Knitting and Me.

CityofLeedsRose:

Reasons why people knit – here’s Mandy’s reason. :)

Originally posted on loonyfeminist:

This is something I have just sent off to Betsan Corkhill, from Stitchlinks. Thought it might make a blog post. So here it is.

I’m 59. I’ve knitted since I was 6, having learned at school from a very stroppy teacher, who got very cross when I made a mistake. 6-year-olds do make mistakes! But my mum helped, and her knitterly friends helped too, so gradually I built up my techniques and confidence.

I never thought of knitting as anything but fun until I became ill in my forties with M.E. (Chronic Fatigue Syndrome) (along with a list of other maladies!) and was medically retired.

At that point it became important to feel useful, even if only in a small way. Knitting provided that. For a long while I couldn’t even do that. I couldn’t concentrate for long enough to even cast on.

Gradually, though, I was able to…

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Living in colour

At the New Year I made the resolution to run a 5k. In order to give me something to focus on I decided to sign up for a few. So I signed up for the Race for Life and the Colour Run, which was today.

The problems with my hip has meant that for a large part of this year I’ve not been able to do much running.  So presently I’m  more jog and walk than actual running. 

After reading bits about the colour run its more of something to do as fun not an actual serious race. Also you dont have to run it. This made me feel better about the situation so I made up my mind that I was going to enjoy it and take my time going round – no personal bests here. 

I went by myself and when I arrived I wished that I was with friends. The run is definitely something to do as a group. I really enjoyed the day and I’m already making plans for next year’s event.  :)

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