Loving Leanne: Living with Rubinstein-Taybi Syndrome

by Debbie Roome, Dorothy Ade

Leanne will never marry, never have children and will never live on her own. She will never drive a car or catch a bus unaided. She will never cook a meal, wash her clothes or iron a shirt. She cannot because she was born with a condition called Rubinstein-Taybi Syndrome (RTS). This rare genetic disorder causes mental and physical disabilities and she will always be dependent on others. Leanne's life story is told by her mother and sister and they examine the highs and lows of caring for a mentally and physically disabled person. The book is divided into six chapters which look at Leanne's early days, how Rubinstein-Taybi Syndrome affects her, her schooling, her extensive medical history, her spiritual and social life, and the ongoing process of caring for her daily. It also includes a list of RTS characteristics and problems and explains how these play out in daily life. Covering the first 45 years of Leanne's life, this book is a story of hope and triumph with a healthy dose of reality mixed into it. An ideal read for anyone who is caregiver to a disabled person or for parents who have a child with RTS.

120 pages, Paperback

First published December 21, 2012

About the author

Debbie Roome was born and raised in Zimbabwe and later spent fifteen years in South Africa. In 2006 she moved to New Zealand with her husband and five children. Writing has been her passion since the age of six and she loves to write stories that touch people's lives and turn them towards God. Over the years she has won many awards and trophies for her work, including placing first in the Rose & Crown Novel Writing Competition in 2009 and 2012 and second in the Faithwriters' Page Turner Contest in 2010 and 2014. In 2015 she placed first in the Faithwriters' Page Turner Contest. Her novel Contagious Hope was a finalist for the Australasian CALEB award in 2013. Debbie's writing has opened doors for public speaking and she is often asked to share her life story and her experiences as a writer.

Reviews

[Sharah McConville · Rating 4 out of 5]

I won Loving Leanne through Goodreads First Reads Giveaways. Loving Leanne is the true story of Leanne Ade who was born with Rubinstein-Taybi Syndrome. This is an interesting book as I had never heard of this disability before. The author Debbie Roome is Leanne's sister and parts of the book are also written by Leanne's Mother Dorothy. The book also contains family photos taken throughout Leanne's life. I also received The Last Chapter which was written after the book was published, with the conclusion to Leanne's story.

[Deborah · Rating 3 out of 5]

Although the telling of Leanne's story was a little dry, I believe this little glimpse into her life (and that of her family) will be a blessing to those caring for children with this disorder or other disabilities.

Although I can appreciate why author Debbie Roome presented her sister's story in this way, from both her mother's and her own viewpoints, I'm not sure that really worked as well as it could have. Even so, I was left with great admiration for the family.

The greatest encouragement from Loving Leanne, however, came from knowing that Leanne had initially been written off by her doctor as uneducable. She certainly showed that doctor wrong. It just goes to show that sometimes there are greater powers at work than medicine can understand--a mighty God and a family's love.

[Jose Knipping · Rating 5 out of 5]

I received this book direct from the author, from the Goodreads giveaway, thank you very much.

I had never heard of this particular disability, but i found this to be a heartwarming read about a mother's, and her eldest daughter's love, for their second child, and sister, who was born with this syndrome.
It reminds us all that we have to treat each other
as we would like to be treated, with love, respect and dignity, no matter who we are,and what we are able to achieve in life.
A read about love, family, compassion, empathy and celebrating each others achievements.
I loved this book.
Thank you Debbie and your mum, for sharing the life of your beloved daughter and sister Leanne.