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Life With An Angel

By Efi Paschalidou

My husband and I wanted a child more than anything else in the world.  After two years of trying we saw the magic line on the pregnancy test. Our joy was unspeakable. But unfortunately my pregnancy was difficult from the start. Placental abruption, hemorrhage, contractions from the 6th month, not being able to feel the baby, prematurity.

We said that it is our child and we would adore it even if something went wrong. 

Finally we held her in our arms after many days in the incubator.

EfiOur doctor and the other doctors in the hospital told us that our baby was fine, that it was a little “behind” due to prematurity.  It was like a black veil was blinding them and they couldn’t see our child’s problem.

But something was eating me alive. I feared that something was wrong.  Thought I felt the happiest woman in the world.  I had a wonderful family and a “healthy” baby.

A “healthy” baby! What a big word!

We thought we were the happiest people on the earth.I don’t know if we are happy but we sure live a lot of happy moments with our children, each one in her own way.  We also have a three-year old little girl who adores her sister.

Our griefs began very soon, she was only 7 months when we had the first diagnose. “Your child has a psychomotor retardation, hypotonic.  You should begin physiotherapy”. Those terms were unknown to us. Where should we go, what should we do, how could we help our child in the best way?

We went to many doctors and heard a lot of things but of course nothing comforting. I was crying all day, I felt like hitting my head on a wall, I wanted to take my child and just disappear. And in my head a big question “God, why us?”

But I had to bring myself back together for my child.

I couldn’t see her crying in her therapies but I had to be strong. I could not stand the fact that I had to see her lying on her bed, unable to move properly, but when I hugged her, I knew that she was my whole life. I was the happiest person on earth.

I couldn’t bear the thought of having to see carefree mothers strolling along the streets, in the parks with their babies, when I was in a hurry to be on time for her therapies.

I felt really uncomfortable when some other parents were talking about their children’s accomplishments, but eventually I realized that what our daughter achieves is the most significant achievement of all.

In June 2010 when our angel was about 2.5years old we received a phone call from her pediatrician neurologist to inform us about the results of a medical test our daughter had. “ something was found, your daughter has Angelman Syndrome. Come to my office tomorrow to talk about it “.

We were shocked to hear that. Instantly we started looking for information about this syndrome. We were crying reading the relevant information. We could not believe that we had hit that kind of jackpot.

The following day I called my husband from work and told him that after our visit to the doctor, I wanted to go out and have fun together. We should feel happy as we were lucky to have found what the problem with our daughter was. We should stop weeping all day long. We knew what the exact cause of the problem was and we knew what we had to deal with for the rest of our life and we had to do our best to help her. We have an angel with us and we must survive. We must stand this difficulty bravely.

Efi 1Our daughter is 8 years old now. She deserves praise for her daily improvements. when her school teachers and therapists tell us that she has improved and therapists tell us that she has improved significantly, we take courage and can cope with it.

“You enjoy what you achieve only if you worked hard for it, if you have obtained it after great efforts and sacrifices.” When our angel manages to reach her goals, it is as if she had conquered the whole world

These happy moments are the reason why we don’t give up and give us great strength in these difficult moments.

So many people wonder what it is like bringing up a charismatic, special child. Yes, it is true that it is difficult sometimes, unexpectedly difficult, it is beyond us. Through her eyes and her smile we can take courage and become patient enough to keep going. We may feel that we are in a dead-end, disappointed at times but we always manage to endure.

Disability is not an infectious disease. Disabled people are the real fighters. The only thing they are asking for, is acceptance. When you meet such a charismatic child do not avert your eyes, do not take your child away from it at school, or in the playground. Let it play with our charismatic child. Do not send it away.

You can be taught a lot by a disabled child. You can learn what the real purpose in life is.

I believed that I had to teach my child a lot about the world, but now I know that I have to learn the world about my child.Efi girls

I would like to thank, from the bottom of my heart Angelman Today magazine, which gave us the opportunity to publicize this syndrome and make it known in Greece.

Facebook Angelman Cover Contest

We just wrapped up the Angelman Cover Contest, congratulations to all of the participants! Everyone played a very important part in raising awareness about Angelman Syndrome.

It truly was a global event. We had entries and votes from all across this planet. Friends and family were sharing and voting daily for those beautiful smiles. Parents had strategized social media campaigns to rally votes.

It was a fantastic way to end the year with some light-hearted fun, awareness and to feel the support from so many people. I noticed in many photo shares on Facebook, people were asking to know about Angelman Syndrome after complimenting the photo.  That is what it is all about!

Thank you all for participating and supporting the families that entered the contest. Please let us know about your experience and if you think we should do it again next year in the comment section of the YouTube video about the contest.

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Congratulations to the Winner Katerina (from Greece)! Just shy of 5000 votes! We had to select another photo of Katerina because of image size and quality limitations of the original uploaded photo.

top3winners

That Vitamin Movie

That-Vitamin-Movie-Banner-160-x6px (1)

 

Worldwide FREE online screening of the complete documentary

January 1st – January 14th

www.ThatVitaminMovie.com

“The body is a self healing organism and if we give the body what it needs [Nutrition] it will do the job”









Sébastien LOEB, committed sponsor for the French Association of Angelman Syndrome (AFSA).

AFSA

“I am happy to bring some help to the children of AFSA fight their diseases. If I can families to stay positive, I would be filled. We spent a lovely day during filming, it was nice to share these moments with Gatien, the team and the association. I give my full support to the AFSA, just like Sébastien Loeb Racing and we will be delighted to welcome the children in the future, on the circuits or other events. ”

– Sébastien LOEB

“Can you imagine a more beautiful relationship, more beautiful friendship for a disabled child that he can establish with a great champion, a great sportsman who agrees to look him in the eyes and say,” I recognize you, and I will support in your fight? On behalf of all children with Angelman syndrome, on behalf of their parents, family and friends, thank you to Sebastian. ”

-Denise Laporte, President of AFSA

For more information visit

www.angelman-afsa.org

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Canadian Angelman Syndrome Society Conference in 2016

cass logoSave the Date — CASS Conference in 2016!

Conference Co-chairs Terry Singleton and Kent Fleming advise newsletter readers that the CASS Board has approved the Double Tree by Hilton in Edmonton as the venue for the 14th International Conference of the Canadian Angelman Syndrome Society, scheduled for 13 to 16 July 2016.

The Registration Booklet PDF is now available to download here.

It is full of information which will allow you to start making plans to attend. It is the work of the 2016 Conference Committee made up of CASS Board Members and CASS Community Relation Committee members led by Co-Chairs, Terry Singleton and Kent Fleming.

Thank you, everyone, for helping to get the word out about your Edmonton 2016 Conference! We look forward to welcoming you to an informative and enjoyable
conference.

We are pleased to announce that CASS has contracted Alberta AdaptAbilities to provide management of the Kids’ Program at our upcoming Conference, “Prospecting for Possibilities” scheduled from 13 to 16 July 2016 in Edmonton.

Alberta AdaptAbilities Association is a registered charity that provides one of a kind programs and services that adapt everyday experiences empowering individuals with special needs to grow, succeed, and belong. They provide caring, understanding, and structured environments for children and adults with special needs.

CASS Conference organizers look forward to welcoming AS families to Edmonton this summer and believe this collaboration with Alberta AdaptAbilities will provide our AS and child delegates with the “Animal Adventures” they and their caregivers will enjoy.

Attach a one-page summary of the 3-day Alberta AdaptAbilities program. Click here to download the program.Kids_Prog_3-Day

Please stay tuned to the CASS website for News Flash Updates on this exciting event!

www.angelmancanada.org

 

KayserBetten

www.KayserBettenus.com

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