Weekend reading and viewing: 17th - 18th October 2015

Abigail’s journey: A trip to Boston makes tomorrow possible
Thriving (Boston Children's Hospital), 12th October 2015
From the time Erika Jones was 30 weeks pregnant, she and her husband Stephen prepared for an excruciating eventuality. The Jacksonville, Florida, couple was told their daughter would die before or shortly after her birth. They arranged for pediatric hospice before Abigail was born. They made a decision tree factoring in clinical scenarios from intubation to a do-not-resuscitate order. They planned to scatter Abigail’s ashes on a Florida beach.

“We didn’t plan for this scenario,” says Erika, quietly glowing and cooing at the healthy newborn in her arms ...

Coping with Loss: Down Syndrome
Nancy McCrea Iannone and Stephanie Hall Meredith, Down Syndrome Pregnancy, October 2015
The book offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome by covering topics like coping with grief; dealing with comments and the practicalities of loss; helping siblings cope; and finding resources. This book also features the stories and photos of families who have experienced loss and who provide their personal insight.

“This booklet provides an immense resource for families as they cope with the loss of their child. I take great comfort in knowing that it will reduce stress for future grieving families by guiding them through this difficult experience” ...

• The booklet is free to download from the downsyndromepregnancy.org website.

On their Facebook page, the writers commented:

After 7 years of working on this book, our gift to the community during "Down Syndrome Awareness Month" and "Pregnancy and Infant Loss Remembrance Day" is "Coping with Loss: Down Syndrome." Our message to that minority of parents who have experienced either a miscarriage or the loss of their baby or child is this: we are so very sorry for your profound loss; you and your child are important and are not forgotten ...

Scrapheapers make $20,000 for Down Syndrome

Michele Jedlicka, Inverell Times, 13th October 2015

They were road-weary and dusty, but smiling.

“Big grins on our faces,” Inverell Scrapheap team member Brendon Campbell said.The Scrapheap Adventure Riders returned home last week from the trip, and raised a significant amount for Down Syndrome NSW. 

“We raised over $20,000, the state raised over $65,000, so our team won the award for Best Fundraiser,” Brendon said. “The next highest team, Sydney, raised $7000, and they have twice as many riders as us" ...

Emi Campbell, Col Meacham and Grace Gilsenan, 

daughter of Scrapheap Ride founder Perry Gilsenan. 

Photo:Brendon Campbell

People With Down Syndrome Design Unique Tattoos For Loved Ones -the results are gorgeous

Kimberley Yam, The Huffington Post, 17th September 2015
These tats are beyond awesome.

In an episode of tattoo reality show "Ink Master" that aired earlier this month, the contestants (all professional tattoo artists) were challenged to ink clients with designs created by their loved ones, who all have Down syndrome. The project not only produced beautiful results, it also moved several of the tattoo artists who were involved ...

Having disabilities is who we are - the eight year old girl who wants to change the world

Starting with Julius, 15th October 2015

A few days ago it was the International Day of the Girl Child and social media joined in the discussion about the importance of education and empowerment for girls. It was a day for standing up for the rights of young girls and to recognise their voice and their capacity to change our world for the better.

One young girl who is doing just that is Emily Prior, an eight year-old from Perth, Western Australia, who has cerebral palsy and is challenging the advertising industry to include people with disability, by forging a path as a model – on her terms ...