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The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fifth Annual International Pompe Day!

The IPA is very excited to announce the winners in each category:

Age 0-7

First Place: Abdurrahman Amerat


The sun gives us light, energy and it grows food to make everyone strong. It also makes the universe powerful.

Second Place: Archie Whitby


Against ALL Odds Archie has been able to learn to communicate via his communication (ccs) book and his yes, no hand movements. After a year of development and support Archie is now able to write his own stories, unlocking his creative skills and imagination. Attached is a video of him composing a short story with the support of his teaching assistant. Archie has many other challenges in life being on a ventilator with minimal movements and many medical needs but despite all of this he is able to display his huge talent!

Third Place: Nguyen lam


My grandmother is 97 years old and my son is 22 months old. On that photo, my son was feeding his great-grandmother. I took that photo by accident with my phone. My son is a Pompe patient and we have been fighting with Pompe disease for 16 months. He is a strong and lovely boy. Now he can walk by himself. He has bright beautiful eyes, I can feel how hard he desire(s) to live and he always tries his best to live a wonderful life. Although facing many troubles, my family always fights together and make sure that Pompe cannot stop the love between my family members. We are strong because we have love.

 

Age 8-12

First Place (Tie): Abdullah Amerat


There is the iceberg at the Antarctic with extreme weather conditions. There are penguins huddling together showing togetherness to survive the weather. This is like the earth and the people together to avoid the problems of disabilities. There is the flag of the earth showing the world working together. There is the flag of England where I live helping me survive and there is the flag of the Antarctic showing where this drawing is based. I wrote together wrong at the top of my drawing. Also there is a poem that I wrote that shows the problems and the theme of "together we are strong":

TOGETHER WE ARE STRONG
I AM NOT REALLY WRONG
THIS POEM ISN'T LONG
BECAUSE ITS LIKE A SONG
WITHOUT A GONG

WE SHOULD BE TOGETHER
EVEN IN BAD WEATHER
AND YOU SHOULD NEVER BE LEFT ALONE
EVEN IN YOUR OWN HOME
LIKE A LITTLE BONE
THERE WOULD BE NO HAPPINESS ON ITS OWN

YOU SHOULD NOT HIDE
OR LET TIME GO BY
WHEN PEOPLE GIVE YOU SIGHS
DONT SAY BIG LIES
ABOUT YOUR HONORABLE DISABILITY.

First Place (Tie): Yuki Arakawa


This song is Golliwog's Cake Walk by Claude Achille Debussy. I am ten years old. It is hard to keep good posture because of my disease while playing the piano. But I like playing the piano. I hope everyone will get more energetic and be happy with my music.

 

Age 13-18

First Place: Ayesha Amerat


The blue color represents the sky surrounded by the white cloud. It's not possible to High 5 the cloud in the sky, just like I cannot be heal completely from Pompe disease. But, it's been my dream to be able to touch the cloud in the sky one day when I'm grown up.

 

Age 19+

First Place: Allyson Lock


I want to ensure that the whole world is included in International Pompe Day.

Second Place: Ms. Hwa-Yeon Cha


(1) I lived in the country side in my childhood, and I got to love the fragrance of the wind and weeds, sounds of leaves, streams and singing bugs, as well as the ever changing sceneries by the four seasons.  I started the cross-stiches to depict the nostalgic landscapes in my childhood. Due to my condition, I could not able to spend long hours sitting to do the stiches and thus also tried to practice it while lying down, which has taken me to continue for about 3 years with this hobby since the beginning. Whenever completing an each and every cross-stich piece, I made a wish for the betterment of my health condition and hoped for dreams that I could walk through the stitched landscape with my child. I remain pretty much the same now compared to how I was 3 years ago, but this fabric art has given me a sense of happiness every day.


(2) Another me in comfort Explanation: I started to make this partcicular cross-stich piece design in order to lessen the feeling of anxiety and uneasiness towards a vague future of myself, who can neither walk properly nor lie down in comfort. A little boy monk depicted in the art piece looks like my son having such innocent and untainted smile, where he does things that I have not experienced in my childhood. A process of making this piece has allowed me to overcome a sense of fear; to bring in peacefulness to my life; and to discover a hidden face of mine becoming a little kid.

 

Third Place: Mark Nicholson


Having Pompe has humbled me in so many ways. Hope has become everything to me. Hope is for the children for they deserve a chance at life, dreams, love, and happiness. Together that hope grows for ourselves and for each other. The more we grasp and cherish it, the stronger it gets.

Together we are hopeful
Together we share our troubles
Together we lift each other up
Together we laugh
Together we love
Together we are one
“Together We Are Strong”.

 

 

Honorable Mention: Natasja Keckhoven-Tesselaar


I started to play saxophone, because my lung function was very bad. By playing the saxophone I trained my lung function and it improved a lot! I also started a crowdfund for the education of my dog and trained him as my assistance dog. And it worked! He helps me not to get overtired. Together we are sooooo strong! (in the video you hear me playing the cup song, my favorite song).

Honorable Mention: Le Thi Mai Huong


The name of the picture: Hand in Hand. We are 6 mothers of 6 Pompe patients and all of them are under 2 years old. We come from Vietnam. We have to face lots of troubles when fighting with Pompe disease but we never give up. We will stay together, be strong and do everything we can to save our children's life. We believe in the brighter future for Pompe patients. When we take part in the 2018 talent contest for Pompe disease, we hope that more people will know about Pompe- one of rare diseases and we want to share a message: together, we can fight and win.

Honorable Mention: Raymond Saich


Segmented Rosewood bowl. Each segment supports the others even when some segments are missing. Together they are stronger

Honorable Mention: Samuel Merrill


The theme this year is "Together We Are Strong." I think this song powerfully represents the hopes and dreams of all Pompe patients collectively. Regardless of how difficult things get, our human resolve "keeps us stargazing" and fighting every single day, working towards something better.

Honorable Mention: Karen Kacures


I try to spread hope throughout the Pompe COMMUNITY by giving others information that will help them deal with their Pompe journey so they can live a good life and have hope in their hearts. The sunset in my photo represents the end of a day that leads to a new beginning tomorrow. The hands shaped in the form of a heart represents hope and love for the Pompe community around the world as our motto says "together we are strong"

 

The IPA would also like to extend a special thank you to our Judges:

  • Dr. Nina Raben
  • Prof. Dr. Benedikt Schoser
  • Paula Waddell

The IPA Board