Hello and Welcome...
... to the 10th Dominic Morrogh Trust newsletter!
In this edition we will be updating you on the important progress we have made towards the long awaited assessment of Dominic’s level of awareness and brain function. There are also updates on a soon-to-be-launched fundraising initiative and a little note about one of the recent fundraisers.
We also have a request. Dom has a new picture board in his room and it is empty! We want pictures from Dominic’s friends and family, so we can fill it up with people that Dominic cares about and loves. Of course, if you have a picture with him, that would be amazing. Please email the pictures to us at firstname.lastname@example.org or mail it directly to Dominic at the Royal Hospital Donnybrook, Dublin 4.
And finally, we are pleased to introduce our latest newsletter feature: ‘Dom Stories’. Make sure you read right up to the end so you don’t miss it!
A Cautious Hope - fMRI Update
Over the last number of newsletters we have talked about functional MRIs (fMRI) and we previously featured an article by Alec, Dominic’s Dad, about a research book on this subject. We have also been actively striving to achieve an fMRI scan with Dominic.
Our sincere hope is that an fMRI could help us understand what Dominic’s level of comprehension is. Or at the very least, establish whether there is some form of cognitive baseline. It is important to say that this fMRI may not be able to conclusively ascertain levels of brain awareness. Or that it may discover that he has no understanding of the world around him. However, even with these possible outcomes, we still strongly feel that we need to pursue this scan for Dom. At best, it will give us a clearer picture about Dominic and his level of understanding so that we can better tailor his care and level of therapy to his specific needs. At worst, we continue along the same care pathway with our visits, funding his vital movement therapies and surrounding him with our love.
Needless to say, this attempt to get an fMRI done for Dominic has been a frustrating road with many dead-ends. It was incredibly difficult to accept that, even after engaging in a pilot study, all of our efforts came to nothing. But then, a very good friend of mine did some research and discovered a new state of the art fMRI facility here in Dublin. She picked up the phone and called them. Amazingly, they responded straight away. They had heard our story and asked her to put me in touch with them.
Within the week they had organised a meeting with me. At the meeting they wanted to hear our expectations, which I laid out and were similar to what I have written above. I have to say, they really seemed to understand why we wanted to do this and were just so respectful about our journey and experience with Dominic.
We now have a date when we are going to see how Dominic and the fMRI equipment get along. It is still not clear what this will involve or where this will go. It could fail miserably, but at least it is progress. So, I remain cautiously optimistic.
- Tara, Dominic's wife
As Tara mentions above, an initial trial using this equipment with Dominic has been set for the 30th of May, 2018. We look forward to keeping you updated in our next newsletter. In the meantime, keep your fingers crossed, as we all hope that this exciting technology may be informative and helpful in Dominic’s journey.
The Cork Annual Fundraiser
This year the annual Dominic Morrogh Trust Fundraiser in Cork was held in March in Barry’s of Douglas. It was a truly great night of entertainment with an acoustic set by Rubyhorse, a DJ set by DJ One (aka Dave O’Sullivan) and it was presided over by Master of Ceremonies, Dave Mac from Red FM. We had some pretty incredible raffle prizes - generously donated by friends and family. The night raised an incredible amount for the trust and we are so grateful to all of you who made it happen.
Dom’s Monthly Supporters Network.
In the next few months, we will be launching a new fundraising appeal for Dom which will enable individuals to become a monthly supporter of Dom’s therapy and care. Stay tuned for details!
Dom’s Story Corner
Over the last seven years, we have all had to come together to fight for securing Dominic a bed in an appropriate setting and have put in place the crucial therapies which have made such a difference to his comfort levels and well-being.
Sometimes, the hardest part has been to stand by and watch the difficult journey that Dominic has gone through, with a growing sense of helplessness. In all of this, it can often be painful to remember the Dominic that was. The incredibly funny yet charming fella, who could also be as equally grumpy. The one who, if you agreed to ‘one’ on a Thursday night… well let’s just say it could be many more! The one who had a certain capacity to convince you of things that you didn't think you wanted!
So, in this newsletter we are kicking off ‘Dom Stories’; a space where you will find stories shared with us by Dominic’s friends and family about a moment they had with him, a moment that when they think back to it, makes them smile. And with this, we want to reach out to all of you: Would you like to share a story with us about Dominic and you, a story which makes you smile about your time with him?
We know that these stories, apart from being great fun, will be very special for Sonja, giving her a window into all the different adventures Dominic had with you.
To kick this off, we have two anecdotes from Glenn and Jayashree (thank you!)
A Trendy Shave
by Glenn McCarthy (Glenn and Dominic met in kindergarten and then again in college).
I recall having to teach him to shave properly when we shared a house in Nantucket for three weeks. He kept missing a section. Well, house is over selling it, it was some cushions on the floor of a laundry room - and we were lucky to have it.
I got him a painting job with a fellow called Ronny Rodriguez, and we were his ‘A’ painting crew! It was a great laugh interspersed with some really terrible painting - as you would expect from two young Cheech and Chong fans. Anyway, he had a three week old goatee growing - but not from his chin. It was under the edge of his jaw bone by his ear.
He was also pretty sun burned as he never took the sun well to be honest, unlike Golden Glenny here! And he had a Rasta look going from the saw dust / paint mix that he left in his hair for days. That, coupled with a thousand yard stare and an inch long goatee from under his ear was not a good look!
It transpired that the mirror in the bathroom was too low and so he honestly never knew that he kept missing a patch. We exploded laughing when he figured it. I’ve lost track of the amount of times we laughed about it over the years and am smiling now as I write it!
The Clinching Line
by Jayashree Kumar (Jayashree officiated Tara and Dominic’s vow ceremony in India)
When Tara announced that she and Dominic were getting married, I was delighted. I had not met Dominic, but had heard him described in almost lyrical terms! Then one day, during a visit to Anuradha in Boston, Tara called and had a conversation with Anuradha before asking to speak to me. What she said to me had me speechless and shaking my head in disbelief.
She wanted me to officiate at the wedding. I, whose tummy turned to jelly if asked to speak at a staff meeting at school. So of course, I told Tara she was mad, and proceeded to explain why it was a rotten idea. Tara on a mission is not easily deterred, but my arguments against this crazy request seemed to be convincing. There was a brief silence and then a male voice came on the phone - Dominic.
"You have to do this for us", he said, and I could hear the laughter in his voice. "You're going to be the only sober person there."
And that was that!
Thank you all for taking the time to read our newsletter. And please remember to mail us some pictures so we can put it up in Dominic’s room.
With love for now,
The team at the Dominic Morrogh Trust.
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