Elijah’s Hope is a Community Interest Company (CIC) aimed at bringing together families affected by the rare disease, Apert Syndrome. Approximately one in 65,000 babies is born with Apert Syndrome, which is a genetic disorder characterised by the premature fusion of certain skull bones. This early fusion prevents the skull from growing normally and affects the shape of the head and face. In addition, people with Apert Syndrome tend to experience syndactyly, where a number of fingers and toes are fused together.
Apert Syndrome is also associated with symptoms such as hearing loss and recurrent ear infections, a cleft palate, hyperhidrosis and fusion of spinal bones in the neck. As a bone condition, Apert Syndrome can also cause a variety of bone idiosyncrasies that can be improved with surgery and/or appropriate postural care.
The Elijah’s Hope vision
Elijah’s Hope is devoted to ensuring that individuals and familiesaffected by Apert Syndrome have a place to come for advice, support and information. We also aim to become the most comprehensive repository of knowledge about Apert Syndrome for families and professionals. We are dedicated to building a worldwide community for people affected by this rare genetic condition.
In addition, our vision is for consistent and appropriate postural care and therapeutic night-time positioning to be available to anyone with complex disabilities or limited movement.
The Elijah’s Hope mission
Elijah’s Hope focuses on improving the health and wellbeing, both physically and psychologically, of people affected by Apert Syndrome. We are passionate about supporting parents whose children may be facing extensive and multiple surgeries, and ensuring that individuals with Apert Syndrome have a strong community behind them, whatever their stage in life.
We are also passionate about postural care and are seeking to challenge the preconception that body shape distortion and its resulting health problems are inevitable in someone with multiple disabilities or limited movement. Ultimately, our hope is that everyone with limited movement will have access to the postural care they need 24 hours a day in the very near future.
The Elijah’s Hope goals
To provide information and support: When an unborn child is diagnosed with Apert Syndrome or parents are asked to give consent to another surgery, we want people to have access to expert information, medical articles, knowledge and support from a community of people who have experience of Apert Syndrome.
To create an international community: We want to create an international community of individuals, families and professionals who have experience of Apert Syndrome.
Improving postural care: We will initially be supporting work across the South West and further afield to teach the right postural care, improving access to proper equipment, techniques and training. We will also be looking at assets and resources within communities that could be more fully utilised. In addition, we will be bringing together like-minded people to share their experiences of postural care and best practice, and offer one-to-one peer support.
The Elijah’s Hope name
Elijah’s Hope is named after our founder, Kaddy Thomas’ son, Elijah. Both Kaddy and Elijah have Apert Syndrome but, due to a brain injury at the age of 18 months following surgery to fit skull distractors, Elijah has complex health problems including epilepsy, scoliosis and a severely distorted body shape. Despite numerous setbacks, hospital stays and health problems, Elijah continues to be a strong, courageous and ever-smiling boy who’s gentle and loving nature shines from him like a beacon.
Through Elijah’s Hope, we hope to support people living with Apert Syndrome, parents who have children with Apert Syndrome, and individuals involved in postural care and working with people affected by Apert.