SPIN 1038
SPIN 1038

12.44 9 Jun 2015


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Emma Styles, mum of 6 month old Luke, has started the 'cream pie challenge' for The AADC Research Trust. Luke is the only child from Ireland to be diagnosed with Aromatic L-Amino Acid Decarboxylase Deficiency and the youngest in Europe.

During Emma's pregnancy with Luke, complications began to arise at 20 weeks. He was extremely small for his gestational age and the umbilical cord had increased resistance (there was blood flow and oxygen still flowing but there was pressure on the cord). At 32/33 weeks, some of Emma's waters broke and so she was admitted into hospital until Luke was born.

AADC is a genetically inherited neurological disorder affecting the ability to produce neurotransmitters, dopamine and serotonin; two of the most essential neurotransmitters needed for everyday living. AADC deficiency presents early in life with hypotonia (poor muscle tone), hypokinesia (decreased body movement), Oculogyric Crisis (known as a spell/attack), autonomic dysfunction (problems with blood pressure, heart rate, sweating, digestion), dysphoric mood (depression,anxiety,agitation), and sleep disturbance.

Some children can't walk, while others can't talk, others can't eat or drink by themselves. Some children respond brilliantly to treatment and can do everything but still have issues with other things. It all depends on how well they respond to treatment. Even if a child responds fantastically to treatment, if they stop taking their medication, they can't walk, talk, eat, drink or even sit up unaided.

Emma and her family are currently waiting to go to England to start proper treatment.

You can get involved in the cream pie challenge HERE and read Emma's story HERE

 

PLEASE HELP ME GET THIS VIRAL FOR MY SON!! I made this video for my beautiful baby boy, Luke, he was diagnosed with one of the world's rarest diseases. Luke is the only Irish child diagnosed and the youngest in Europe. There has only been roughly 130 cases diagnosed throughout the world. It's a neurological and metabolic condition. Luke is affected daily and in every aspect of his life with this horrible genetic disorder Aromatic Amino Acid Decarboxylase Deficiency (AADC) Luke and others like him really need your help to find out more research and hopefully get a better effective treatment one day! We need your support and donations to help make this happen. Please watch this video, share it, take part in the Cream Pie Challenge, upload your cream pie challenge video or selfie to www.facebook.com/creampiechallengeforluke and please donate money to AADC Research Trust through my just giving account https://www.justgiving.com/emma-styles1/ or if you have a UK Mobile network please text LUKE42 to 70070.  From mother to mother, parent to parent your first instinct is to protect and fight for your child in this world and that's exactly what I am doing for mine through the Cream Pie Challenge.Fill a PAPER plate with whipped cream, pie a friend or yourself and nominate 5 friends. Lets get this viral and help us to help Luke, you could be truly changing our kids lives. Lets fight harder than AADC!!

Posted by Cream Pie Challenge for Luke on Friday, June 5, 2015


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