Fetal alcohol: a family story, a campaign and a UK conference
Susan Fleisher, Director of the National Organisation for Foetal Alcohol Syndrome is inspired by her daughter Addie (pictured). She writes:
When I adopted my adorable daughter, Addie, she was almost 3 years old. I went to the trouble to find and meet her birth parents. I liked them and felt confident that I would like and grow to love their daughter. Because Addie's parents were alcoholics with no proper home or income they were not able to care for her. So they gave me their permission to adopt their special daughter.
It wasn't until Addie was 11 that I found out the true reason for her confused behaviour and learning difficulties. At a conference for adoptive parents I learned that my wonderful daughter had the most widespread, under-diagnosed disability in the world. I learned that because her birth mother drank alcohol in pregnancy Addie was born with alcohol related birth defects known as Foetal* Alcohol Syndrome (FAS).
I learned that Addie's birth parents drinking would affect her for the rest of her life. She is now 25 and continues to struggle with challenges related to her disability.
It is difficult to watch an intelligent energetic young woman face complexities and problems that could have been prevented if her birth mother had known to avoid alcohol while she was pregnant.
A dear friend, Celia Atkin, knew our family and wanted to help my daughter and other children and people affected by Addie's disability. She and her husband Edward supported me to establish our charity, NOFAS-UK, the National Organisation for Foetal* Alcohol Syndrome. To this day Celia funds our projects and our Medical Advisory Panel. Lord and Lady Mitchell are patrons because they too want to help the children and people with support.
NOFAS-UK also provides programmes for schools and the public to educate all women to avoid alcohol in pregnancy. The alcohol company Diageo has sponsored our 'Alcohol in Pregnancy Training" for over 11,000 midwives.
With education and abstinence throughout pregnancy this disability can be prevented!
The work of our charity has taken over my life. I am passionate about my work, but my real raison d'être is my daughter Addie. She is my first priority and my inspiration.
I arrange my work around Addie as much as possible. My office is a five-minute walk from our house so Addie can get to the office or I can get home when she needs me.
Addie has attended special schools and a special needs college where she studied animal care and horse care. Animals are not judgmental when it comes to people with learning disabilities. Animals and pets give Addie additional love and companionship.
One of my greatest discoveries has been RIDING FOR THE DISABLED. The RDA provides support for disabled horse riders of all ages. Two years ago the RDA supported Addie at the Special Olympics where she won 2 bronze medals and one gold.
The RDA has taught me that, with appropriate support, people with disabilities can achieve, get satisfaction and find fulfillment in life.
As the Director of our charity and as a mother, I still have many miles to walk and much to do before I sleep. But, I am essentially an optimist. I am confident that 'together' we can all do our small bit to help make our tiny corner of the world a better place.
* Use the international medical spelling FETAL without the 'o' to access medical research and studies.
Conference - Meet the Many Minds and Experts: Decoding FASD
