A Tipperary family tell their inspiring story as Spina Bifida Hydrocephalus Ireland launches it's second Awareness Week in Ireland for 2017 today (Monday).
Six year old Alicia Riordan lives in Cashel with her parents Joe and Jacqueline. She has spina bifida and uses a wheelchair.
People are surprised when they see little Alicia wheeling herself along beside her parents Joe and Jacqueline and that they are not pushing her wheelchair. However, what people do not understand is that Alicia is a very independent and capable child and is able to – and wants to – take charge of her own mobility.
“She knows that her legs do not work, but she has never known anything different. She is tough and independent and we have always encouraged her to do things for herself," her father Joe says.
You can read Alicia, Joe and Jacqueline's inspiring story in full on the SBHI website *click here*.
The aim of World Spina Bifida and Hydrocephalus Day (WSBHD) on Wednesday, October 25, is to raise awareness and understanding about spina bifida and hydrocephalus.
SBHI is celebrating Spina Bifida and Hydrocephalus Awareness Day for a whole week with the initiative #sbhiawarenessweek.
Telling their family’s story on Day 1 of SBHI's Awareness Week 2017 (Monday), Joe and Jacqueline will stress the importance of raising awareness in the hope that people will see Alicia as an independent young person first and not her wheelchair and disability.
For six out of the seven days of SBHI's Spina Bifida and Hydrocephalus Awareness Week (Monday to Sunday, 23rd to 29th October), two members’ stories will be published on www.sbhi.ie/aw2017.
Then on World Spina Bifida and Hydrocephalus Day (Wednesday, 25th October), they will share information to remind the public and policymakers that spina bifida and hydrocephalus are a reality; that it is imperative to increase awareness about them and improve the lives of people living with these conditions.
Then on Facebook, Instagram, and Twitter, they will encourage members and the public to both read, comment and share the stories.
A total of 13 of SBHI's members and their parents, from young children to teenagers, to young and mature adults, have graciously and generously shared their experiences of adversity, strength, courage, and determination.
They are doing so in the hope that the shared human experience of their lives will help to educate the public about the conditions and to show other members that they are not alone - that we are united, as one community, by spina bifida and hydrocephalus.
Speaking ahead of the week-long initiative, SBHI CEO, Tom Scott, said, ‘There are thousands of people living with Spina Bifida and/or Hydrocephalus and yet many people in wider society remain unaware of this. This matters, because when it comes to understanding the challenges our service users and members face, we need there to be an appreciation in the first place that around 40 babies a year are born with spina bifida, and 1 in 1000 live births are born with hydrocephalus.
‘It will be from here that we can successfully campaign on how we can work together to improve the services on offer and the standard of live available to everyone who knows the conditions to be a reality in their lives.’
Are you all ready to take part in SBHI Awareness Week? Great! So, get ready to read, comment, and share and don’t forget to use the hashtag: #sbhiawarenessweek
Other hashtags you can use include: #spinabifida #hydrocephalus #sbhi #disabilityawareness #unityindiversity