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Visit the charity's profileThis year sees our 3rd ANNUAL Teddy Wears BLUE for AADCd Awareness Campaign, dedicated to those children who are struggling every day living with the ultra RARE brain disease; Aromatic Amino Acid Decarboxylase deficiency (AADC / AADCd).
In 2019 we are focusing our Awareness Campaign on the pioneering Gene Therapy treatment, received by our AADCd children.
Gene Therapy is complex brain surgery that has disease limiting and life changing results. This treatment has the potential to set the benchmark for many other neurometabolic diseases with a single gene defect and we are very proud to be a part of a journey that could drastically change the landscape in how we treat many RARE diseases.
Currently there are 2 types of Gene Therapy being offered to AADCd patients:
1) AADCd Gene Therapy (Target Area Putamen) Taiwan / Japan
2) AADCd Gene Therapy (Target Area VTA & SNpc) USA / Poland
All week we will be delivering informative posts regarding both versions of Gene Therapy including statistics, videos, articles, patient insights, etc.
How has Gene Therapy changed your child's and family's lives?
GT changed his life in so many ways. The quality of his life has improved so much. He can tolerate doing more fun activities than he used to. He can sleep through the night and is more awake and alert during the day. He acts happier in general. It has improved our family's life as well. We can do more together without worrying about OGCs. It is so much easier to carry him around now that he has more tone and is gaining weight. Plus, we have so much hope for what he will be able to do in the future.
Would you recommend Gene Therapy to other families?
Absolutely! Even if having no OGCs was the only improvement he had gotten from the surgery, it would be totally worth it. That alone remarkedly improved his quality of life. He can sleep through the night and actually enjoy life during the day. He is so much happier. He has purposeful movements, which has to be such a neat experience for someone who could never do that. He now has such a better quality of life, which to us was worth the risks of surgery. We would do it all over again if we had to.
So please join us and help us to create the most successful AADCd Awareness Week yet! All you have to do is dress in BLUE for a day, two days or even all week or get involved by hosting an Afternoon Tea Party and make a donation to our page to help us continue to fund research to find a #CureAADC.
ALL funds raised by this campaign will be set aside to help families struggling with the off-treatment costs incurred whilst visiting a treatment centre that may be many miles away.
NO child should ever be excluded due to geographical or financial difficulties.
For more information please visit:
https://www.facebook.com/AADCResearchTrust/
#Cure AADC #CureAADCd #TeddyWearsBLUE #Blue4AADC #AADCAwarenessWeek2019
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