Monday, July 19, 2010

Slowly but surely... Brian's first year

It's hard to believe, but it's been one year ago today (19 July) that Brian was first injured. He's made some amazing progress. If you've listened to him singing in the YouTube videos ( and, you know this firsthand. But he has a long way to go. Your support, whether it's through donations, or visits to Brian and his family or just keeping up with this blog is enormously appreciated and keeps Brian and his family going day by day.
Research for Brian's treatment is going slowly, but steadily. I've gotten several emails and phone calls from both facilities and patients who have received stem-cell therapy. Several different people I've talked too have been most helpful and hopeful for Brian's recovery. Many thanks to all who have responded!
Brian has yet to see the Neuro-Ophthalmologist in Dun Laoghaire, so once that happens, we'll be in a better position to know exactly where to turn next! 
Some of the interesting things I've found out:
It may not necessary to go all the way to India. Promising results might be as close as Europe or North America!
One patient's father said treatment for his son cost around $30,000 - so we may be much closer to getting Brian's therapy than we thought! 
Based on others' experiences with stem cells, results might begin to be noticed within just a few days of treatment!

Still, Brian has a long way to go. Below is part of Grainne's (Brian's sister) email update on Brian. If you'd like to receive Grainne's updates in your own email, just let me know and I'll forward your address on to her.

And last but not least - many, many thanks to Brian's latest donors! 
Rob P, Deventer, the Netherlands $10.00
Beverly C, New Orleans, La. $26.00
Lea B, Nottinghamshire, UK $75.00

Here's Grainne's update:

Dear Family & Friends,

It's hard to believe that today, July 19, 2010, is the first anniversary of Brian's attack.  We've all come so far, and we've watched Brian come even further.  Getting a phone call the morning after Brian's attack is something you just never prepare yourself for.  When you live away from "home", you always dread the phone ringing early in the morning, but nothing prepares you for bad news – nothing.  I dreaded today, and I dread tomorrow, but a year has flown by. For that, we're all grateful!

Brian has been in Ireland since May 8, and he's doing well in so many ways.  I spent the last two weeks in June with him, and he's amazing.  He's now engaged in Physical Therapy 4 times a week, but that's not enough for Brian; he uses the bike pedals at Beech Lodge, for over an hour every day.  He's involved in several types of therapy, including music therapy.  This is his favorite one, as most of you know he's a huge music fan.  Brian had a tracheotomy for over 3 months, so his voice has changed, but it hasn't stopped him singing. 

As time goes on, we're hearing more and more about the severity of Brian's initial injury.  He suffered several serious strokes in the early stages of injury, which is the reason for his left side paralysis.  The "experts" said, "he'll never have use of his left side again, but you should see him ride those pedals!  He's working hard on his upper left side too, but it's taking a while. 

While I was in Ireland, we hosted a Fundraiser for Brian.  This was strongly encouraged by media, and friends, as a way for people to show their support for Brian.  We're knee deep in research for Stem Cell treatment, but there are so many places, and with every success story, there are some horror stories, so we're not about to jump into anything without knowing as much as possible.  Brian's blindness is the worst for him (and us, of course).  Not a day goes by when he doesn't say, "do you think I'll ever see again"?  It's like someone stabbing you with a spoon. 

The Fundraiser was a blast.  We had planned for about 200 attendees, but we're pretty sure the turn out was more like 450 to 500! What a great night!  Of course, Brian stole the show, over and over.  To be honest, the turnout was a true testament to my parents.  If you knew how much they do every single day, you would wonder how it was at all possible.  My whole family works hard every day at taking care of Brian, but my parents are responsible for more than I can begin to explain.

Dealing with the paperwork side of Brian's condition is a nightmare.  Thought Brian lived and worked in the UK for over 9 years, the UK denied Brian any type of disability.  We couldn't even get Brian into the Irish system until he was physically in the country, so we had to start the process in May, and it's only now starting to come together.  We're a long way from getting it done, but it's a constant flow of paperwork after paperwork, after phone call, after meeting. 

We've set up a blog for Brian, so we'll be putting these updates on there. It's a blog that you can comment if you'd like.  Feel free to forward the link to your friends, or you can put it on your facebook or twitter, as a way to show support for Brian, and his ongoing rehab. 

Now, more than ever, Brian would love to hear from you.  He's having a really tough time, and it's always good for him to hear words of encouragement.  Even if you don't know Brian, you can email, or comment.  We all have something to say, so if you want to say something – come on, say it!  Just because Brian is no longer in England, it doesn't mean that he doesn't miss it.  Nottingham is where Brian chose to live.  He fell in love with Nottingham, and built his whole life there.  Out of sight, out of mind, is easy for us, but for Brian, he's trapped inside his own body and mind right now, so if you can take the time to write a few words of encouragement – thank you, thank you.

If you'd like to use the "donate" button on Brian's blog page, go right ahead.  Every single penny goes into Brian's Trust account, and it's all for Brian's medical care.  Stem Cell treatment is not covered by Brian's insurance, but we're not about to tell him "sorry, we can't afford to try EVERYTHING possible to give you your eyesight", so if you can help, go for it! 

I'll keep the updates coming.  They're a little less frequent, but it's only because progress is slow.  It's slow, yet steady, and moving in the right direction, and that's what matters. 

From my very grateful family to you and yours – thank you, thank you.

Much love,

Brian Sr., Phil, Siobhan, Grainne, Nevis, Brian Jr., Jonathan, and Shane.  xxx

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