It has been a year since my Mummy and Daddy were told I had Moebius Syndrome and My Mummy has asked if she can write in my blog so as it was Christmas I thought I would let her.
During the last twelve month's we have learned more than we ever wanted about a rare condition. We have spoken to many consultants and Doctors and have had to become mini experts so much so that the consultants often ask us for our opinion! We would love to meet a Consultant who knows about the condition as a whole but unfortunately it is a complex syndrome that involves lots of people who are experts in their bit. Who knows maybe in 2009 we can help establish a centre of excellence that will allow us to see the whole picture and consultants will have seen more than one or two people previously which would give them a knowledge base to draw upon.
12 month's on and Isaac is still unable to give us a toothy grin. He has his tiny 'smile' that gives him dimples on one side of his face and considering how little his eyes can move has a mischievous look that can bring a tear to your eye. Isaac is now able to show his emotions in other ways. Only this morning he reached out to give me a cuddle and moments like that are priceless. He also has developed a love for pulling hair which is not always wanted at 2am! He could not sleep the other night and so we brought him into bed but instead he just kept crawling on top of me and giggling whilst he pulled my hair.
Christmas passed him by and it took several days to open his presents. I think next year might make more of an impact. He loved his presents but just wanted to eat the wrapping paper!
The first few month's of 2009 are already busy with lots of scheduled appointments and on March 3rd Isaac will have his eye operation to straighten his eyes. A date to look forward to with excitement and dread in equal measures.
The kindness people have shown during the past year has been lovely and just a few of the highlights include a beautiful Carrol service held by the Mold lodge who raised over £200. A local village, Cilcain, have been lovely and supportive over the past year as have Glanrafon School who kindly raised money for the Trust over the last term. Kindness has been shown by so many people and we are very grateful to everyone for their help both in terms of support and fundraising.
A photographer, Sebastian, recently visited the local Jo Jingles group we go to and to be honest I found the experience quite hard as Isaac is not always the most photogenic because of the lack of expression. It is also hard to see the cheeky grins on the other children and know that that moment is forever captured. Sebastian was great and the photos he produced captured Isaac beautifully. One of his photos is above. When Sebastian found out about Isaac's condition he kindly gave the photo's as a Christmas gift so I can use them as thank you cards. If you want to learn more about his photography you can visit his site at www.stellaphotography.co.uk.
Wishing you all a wonderful New Year and big cuddles off Isaac.
Ceri xxx
2 comments:
My son also was born with Moebius Syndrome. He has had three eye muscle surgeries, tried botox injections twice and needed to have plastic surgery to pull his lashes from sitting on his cornea. He is now six years old and is doing great! He is in the first grade and is making friends slowly, as he prefers to play by himself. He has come a long way and I expect him to do great things in the future. I wish you all a Happy New Year and good luck with the surgery!
Hi
Thank you for telling me about your son. It is always great to hear such positive stories and also what treatments people have tried. I will let you know how the surgery goes.
Take care and hugs to your son who I am sure make syou proud in so many ways.
Ceri
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