Sunday 20 January 2013

CFC International Conference 2013.



We've finally done it! After lengthy discussions we have actually booked our flights, our villa and our family room at the Renaissance Sea World Hotel in Orlando, Florida and we are going to the conference!

We last attended a conference in 2007, 7 months after Marcus had been officially diagnosed with Cardio-Facio-Cutaneous Syndrome. It was perfect timing and we learnt so much from the presentations, work-shops, clinical examinations and the other families who attended.


CFC Syndrome is incredibly rare with maybe only 200 - 300 sufferers worldwide so being able to discuss Marcus' condition with a doctor who had actually HEARD of it was a rare treat! We listened to geneticists, cardiologists, gastero-enterologists (to name but a few!) who had genuine interest in CFC, spoke passionately about the condition and filled us with hope. We had the opportunity to meet with therapists who had successfully treated other children with CFC syndrome. We also had plently of time to meet other families who were facing similar challenges to us; some were just beginning their journey like us and lots were much further along.


Suddenly, we didn't feel like a family with a child who was different. We belonged. I didn't have to explain to these people why my son didn't eat solid food or why he signed. I didn't have to explain why he was so sick and no medicine seemed to help or why his hair was sparse or why he got frustrated when I couldn't understand what he wanted. I didn't have to explain why my 2 1/2 year old boy was the size of a 9 month old baby and couldn't walk or why he scratched his skin until he bled and how I'd tried every potion, lotion, washing powder and fabric conditioner to make him stop. I loved the fact that everyone knew why Marcus was sweating, struggling with the heat and covering his eyes in the bright Orlando sun ... becuase so many other children were reacting in just the same way!



On the first evening, there was a reception and my heart filled with joy when I saw all
the short, curly-haired children and a few young adults: some in wheelchairs or in buggies, some walking unsteadily and others very confident. Our children are all unique but this was like discovering a whole new family. The physical resemblance between our children is striking and although their stories are all different, there
are many similarites and we learnt so much by comparing our experiences with other parents.


Returning to 2013, Marcus is now eight and progressing well. Our daily challenges have changed such a lot over the last six years and we feel the time is right for us
to go to the conference again. The flight will undoubtedly be difficult with three children under 10, including one with special needs and a demanding toddler. My mother-in-law has volunteered to come and help out and we have booked with a premium airline to avoid a stop-over and anti-social flight-times. We considered the possibility of just one of us going to the conference with Marcus but how could we justify that to the girls who often have to take second place to Marcus and his additional needs? So Orlando it is! The full Disney package! I am so excited! Romilly is the perfect age for Princesses, Joely is the prefect height now for rollercoasters and Marcus loves Mickey and Friends.


There's so much I am hoping to gain from this year's conference. Marcus has made lots of progress so I have lots of experience to share with others too. I want to hear how other CFC children are progressing at school; how we might help his speech; I want to find out about communication aids, who has benefited from growth hormone therapy and Co-enzyme Q10 supplements and what might we hope for Marcus when he reaches adulthood and what should we be doing to prepare for that?


Obviously, a family trip to Orlando doesn't come cheaply and we will manage to pay off this holiday eventually! However, organising a three day international medical/family conference takes an awful lot of time and money too and if you feel that you are in a position to make a donation to CFC International then your generosity will be greatly appreciated by everyone in our community. Thanks for reading.

http://www.cfcsyndrome.org/donate.shtml




4 comments:

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  2. First of all I would like to say great blog!
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  3. I am so inspired by your story. We received the diagnosis a couple of months ago so this is our first conference. I hope we can meet at the Conference!

    Mirna

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  4. I''ve only just seen this Mirna. It was brilliant to meet you in Orlando! Happy New Year to you all x

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