I have been having a very busy time lately! I had my first hair cut which is great because my Mummy says I don't look like someone from the 1970's with a comb over now!!! My Mummy has also written an article for The Independent newspaper so if you would like to read more about me and my condition it is in the paper today (Tuesday).
I went to meet a plastic surgeon at Alder Hey on Friday. It was a very very hot day and so I was sick on Mummy when we were at the hospital. I was ok but Mummy smelt a bit yucky. The plastic surgeon was very nice but there is not very much he can do to help me smile. There is smile surgery if I need it when I am a lot older but that is a very very big operation and it might no make much difference as they move one muscle from your leg or chest and it can never do all the work 40 muscles usually do. I also saw the eye surgeon Mr Chandna. He says he will operate on my eyes in about a year and hopefully make my eyes a bit less winky wonky.
People are trying really hard to raise some money so that we can do some research into Moebius because no one knows why it happens. We only need another £15,000 to get the research under way. It would be so exciting to try to find out why this happens so no other Mummy and Daddy have to learn that they will never see their child smile. If you can help can you contact my Mummy please on ceridwenhughes@homail.co.uk.
I will put a picture on here soon showing my lovely new hair cut.
Big hugs
Isaac x
5 comments:
Hi Isaac,
You are so brave and bright. My mother says that I am her sunshine who lights her up whenever I smile.I do think your mother knows you always smile for her.
Zaki, 5 years old (www.mmurniati.typepad.com)
Hi Zaki
Thank you for your lovely comments. Isaac is a happy little boy and as he grows I am sure he will find many ways to show us this happiness.
Love
Isaac's Mummy
Hi Isaac and Mummy,
I have a boy with some disabilities, it was a long time before he smiled, he also had strabismus until I took him to some sessions of Biodynamic Craniosacral Therapy when he was three years old. Starbismus dissapear and he started smiling and a lot many other improvements happened.
Pls, I am not trying to raise your hopes unjustifiably, I don't even know if you may have already try it, but I though I should share this w/ you. My son is still a disabled boy with many things he will never be able to accomplish, but I have continued with the sessions since that time (first in Spain and now we live in the USA). When we moved there was a period of about six months when he did not received any, and there was a definite regression in comunication and focus.
My son, Tevake, is nine now and the youngest of six siblings. I am a Biodynamic Craniosacral Therapist nowadays.
My best wishes,
Mar Vial
I am the mother of a 17 year old boy with Moebius Syndrome as well. Mike had smile surgery with Dr. Zuker in Canada when he was 6 years old, and has had a smile ever since. He also had strabismus surgrey when he was around 1 year old. Additionally, he recently had surgery to bring his lower lip down so that his two lips can touch and his bilabial sounds (b,p,and m) are much clearer. Mike is a junior in a very prestigous high school. He is now looking at his college options for year after next.
Mike is pretty much like every other 17 year old. He drives a car, has a good group of friends, and enjoys life.
Luckily since Mike was born, there has been a lot of progress with Moebius. I was originally told that we would never meet anyone else with Moebius, and that there were only 64 diagnosed cases in history. Thank goodness for the internet, which has made it possible for these connections to be made. Additionally, I know the Moebius Syndrome Newsletter published by the Moebius Syndrome Foundation in the US goes out to over 1000 families all over the world. The DVD the foundation made is also amazing. How I wish I had those things available when Mike was little!!!
I have also been following all the research that is going on. Both Johns Hopkins in the US, and the Hospital for Sick Children in Canada have been doing some amazing research on the causes of Moebius Syndrome. Johns Hopkins has quite a few DNA samples that they are working with due to the enthusiastic participation of Moebius Families. Dr. Ethlyn Jabs, who is running the study is regarded as one of the best genetic researchers in the world!!!
One thing to remember is that even though children with Moebius can't smile (at least not without surgery!!), they can laugh. I once remember an older child coming up to me and saying "Is it true that Mikey can't smile". He was visibly upset when I responded yes. I then said "but he can laugh". The other boy brightened considerably, and stated "Oh, then he's okay" and rode off on his bicycle!!! Its amazing how a child's mind works. He thought that the inability to smile meant that Mike was unhappy. Yet when he found out Mike could laugh, it became no big deal!!!
Sometimes things will be harder for Isaac, but first and foremost, he is a little boy who just wants to be a little boy!!
hi ...
i stumbled upon your article today as i set up a google alert to let me know when new things appear about moebius. my son willem is going to be 3 in july and has moebius. i started a blog myself this year as a way to get in touch with other famlies going through similar situations... the address is
moebiusmom.blogspot.com
here in the states i am very excited about the upcoming convention set up for this july!!
i wish you and your family much happiness... leslie
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