Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March
Julie attended the joint Irish rare disease event at Riddel Hall in Belfast on 5th March and was really pleased to see the great joint presentation from Gillian Cassidy of 22q11NI and Anne Lawlor of 22q Ireland which really brought 22q11DS to the front of the queue (no pun intended) at the meeting. Max Appeal got lots of mentions as the go to place. The dynamic and motivated Dr Tabib Dabir gave the run down on his innovative transition clinic that has been running in Belfast for two years now, ably supported by Gillian. This is certainly a model that could be replicated.
www.nirdp.org.uk/
This is a poem written by Gillian for her daughter Lucia:
WHILE YOU SLEEP, LUCIA...
How many hours in a hospital chair with you?
How many worrying thoughts?
How many painful tears will you cry?
The rain beats against the window
The many drops can't compare to the moments of concern for you.
Watching your body tied to wires due to underlying missing genes Ties me up with resolution to make your journey count The years you had no voice, no words Seemed to have created in me the need to initially be your voice then the voice of change.
The voice of advocacy.
The recounted medical history underlines just how many bodily systems are affected.
It brings to the forefront how much you deal with yet how normal you think it all is.
Your dada and siblings at home spending hours without us.
The updates to worried family and friends.
When did an ever ready hospital bag become the norm?
When did you become adept at reassuring your 3 year old sister you would be home in a 'minute of little time'?
When did your 2 year old brother start begging 'I want you'?
Right now as you sleep in this hospital bed.
Right now the photos of you are your words Right now people know about 22q because of you.
Right now is counting for something
Right now you are changing the world.
When I ask them if they know about 22q it's not a idle question.
It's me wanting to start a revolution, for you and all those like you.
WHILE YOU SLEEP, LUCIA...
How many hours in a hospital chair with you?
How many worrying thoughts?
How many painful tears will you cry?
The rain beats against the window
The many drops can't compare to the moments of concern for you.
Watching your body tied to wires due to underlying missing genes Ties me up with resolution to make your journey count The years you had no voice, no words Seemed to have created in me the need to initially be your voice then the voice of change.
The voice of advocacy.
The recounted medical history underlines just how many bodily systems are affected.
It brings to the forefront how much you deal with yet how normal you think it all is.
Your dada and siblings at home spending hours without us.
The updates to worried family and friends.
When did an ever ready hospital bag become the norm?
When did you become adept at reassuring your 3 year old sister you would be home in a 'minute of little time'?
When did your 2 year old brother start begging 'I want you'?
Right now as you sleep in this hospital bed.
Right now the photos of you are your words Right now people know about 22q because of you.
Right now is counting for something
Right now you are changing the world.
When I ask them if they know about 22q it's not a idle question.
It's me wanting to start a revolution, for you and all those like you.
Source: maxappeal.org.uk/news/content.asp?ni=527&pv=1
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