by Nikki Sanderson, Early Help Partnership Project, Pathway Co-ordinator, Community Action Network
Last week I was invited to meet a wonderful family in the Bournemouth, Christchurch & Poole area to hear about the impactful role charities have played for their family. George* had recently been diagnosed with retinitis pigmentosa, a rare genetic disorder that affects the retina and leads to progressive vision loss. This life-changing diagnosis brought significant challenges to George and his family, but it also revealed to them the incredible help available through charities. The family reached out to LOOK and the Dorset Blind Association, who immediately provided invaluable support.
LOOK, a charity dedicated to supporting young people with visual impairments offered emotional support, resources, and guidance to help George navigate his new reality. They introduced the family to other parents and children facing similar challenges, creating a sense of community and shared understanding. These connections also provided them with practical advice, emotional support, and a sense of solidarity.
Dorset Blind Association has been instrumental in providing a guide to practical assistance. From mobility training to assistive technology, along with starting the conversation about the equipment George may need in the future so he can maintain his independence, they are hand to help educate the family on how to adapt their home as George’s eyesight changes.
George’s family told me that the charities have been an immediate lifeline. They have provided essential services and offered hope and encouragement during a very difficult time. The family is deeply grateful for the support they have received, and are determined to give back. To show their appreciation and ensure that these charities can continue their vital work, George’s family embarked on ambitious fundraising efforts such as ultra-marathons and skydiving to raise money.
George’s parents shared that receiving a diagnosis like retinitis pigmentosa was very overwhelming. “When we first received George’s diagnosis, we were devastated and felt completely lost. But the support from the charities has been a beacon of hope for us. They’ve provided us with the resources and sense of community we desperately needed”.
George and his family already feel that they are going to receive the support necessary to navigate the challenges ahead. I found talking with George and his parents incredibly inspiring. George told me he has already attended a visually impaired football session run by Longfleet Football Club and very much enjoyed it along with finding meeting other young people with a visual disability helpful. This courageous family are facing the diagnosis head-on.
The family are working closely with the Vision Support Service offered by Dorset Council, whose support they rate as excellent, and want to highlight the vital role that charities and community groups provide families given a life-changing diagnosis, as they create a lifeline and offer amazing support.
George is right at the beginning of his journey, but it is already clear that he is surrounded by an abundance of love from friends and family. I believe that alongside that and the understanding and guidance from the charities, George will live his life to the fullest. With the help of LOOK, Dorset Blind Association and other charities, George and his family are facing the future with hope and determination.
*Not the young person’s real name.
DBA – Supporting blind and partially sighted people in Dorset to live happy lives.
