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Sunna´s short story

 

Sunna Valdis, the only AHC patient in Iceland

Sunna Valdís Sigurðardóttir is 6 years old and has one brother, Viktor, who is 12 years old.

She lives in Reykjavik, Iceland.

Sunna suffers from Alternating Hemiplegia of Childhood (AHC) and also Dystonia which sets certain boundaries to her quality of life that she and her caregivers will have to work around her whole life.

History

Sunna was born on February 9th 2006 after a normal pregnancy.  She started to have episodes at 5 months and was diagnosed with AHC at 14 months after many months of testing and research. Luckily we had an excellent neurologist so the diagnoses was made early.

Before she was diagnosed with AHC she was wrongly diagnosed with epilepsy like so many other AHC patients.

Sunna has been in and out of hospitals her whole life but less is these last years because hospitals do not agree with her, there is just too much stimulation.

Development

She is not fully developed physically or mentally but is slowly adding to her ability to do things by herself when she has breaks from the episodes.  The episodes can put her development back a few months if they are bad.

She is a healthy eater and is quite tall for her age.  She has days where she does not consume much but then again she has days when she eats like a pony.

Social

Sunna is a high spirited young girl, very joyful .  She likes to play with her dolls and playmobil figures and to cut and glue which is her favorite hobby.  At school she needs to have a paraprofessional all the time by her side in case she gets an episode or is about to have an episode.

She likes to play with friends but the playtime has to be monitored because the excitement of having someone to play with can be overwhelming.

Sunna does not go to birthday parties or to places that are crowded because the stimulation puts her in an episode.

She has a very good and mature humor, she can understand everything that we say to her and sometimes starts laughing uncontrollably if she finds something really funny, her laugh is so infectius that when Sunna starts to laugh the whole family is in a fit;)

Her name Sunna has the meaning sun or sunshine and she is truly our ray of sunshine

 

Future

Sunna currently goes to preschool .  This fall (2012) she goes to a special school where she will be studying until the age of 16.  Her future´s well being will depend on how many episodes she will have and if she will develop other conditions.  Our hope is that she will be able to take care of her basic needs in the future and live a happy life.