What began as a mother desperately searching for help and information, for the relatively common hip condition DDH, that her baby son had been diagnosed with, has now grown into the first national charity in the UK dedicated to Developmental Dysplasia of the Hips (DDH).
Natalie Trice was devasted when her second son, Lucas, was diagnosed at 5 months with the hip joint malformation condition DDH (Developmental Dysplasia of the Hips).
Like most parents today Natalie set about searching the Internet looking for information, advice and emotional support, but all she seemed to find were articles in veterinary publications about Labradors and very little information aimed at parents of babies and children diagnosed with the condition.
For Natalie there was a family history of DDH which although strong has not assisted the discovery or diagnosis of Lucas until he was 20 weeks old, missed at the newborn check and again at the 6 week post natal check, Lucas had been undiagnosed until a simple ultra sound scan was carried out after concerns were raised by Natalie and her husband to the health care professionals.
The scan results and subsequent Orthopaedic Surgeon appointments, have resulted in Lucas over the years having to endure countless surgeries to reform the Hip ball and socket joint, break and realign his pelvis and thigh bone, as well as weeks spent in hospital, months living with heavy and cumbersome plaster casts and x-rays, scans and clinic appointments too numerous to mention.
Natalie and her husband Oliver had to find the difficult balance of being with Lucas as well as providing some sense of normality for their elder son Eddie, supporting each other through the difficult and testing times and participating in the normal everyday life that was going on around them.
It was this struggle and difficulty in accessing good, relevant information that struck a chord with Natalie.
She felt that if they as a family, who already had personal experience of DDH, with her sister and two cousins having been diagnosed many years before, were struggling for support, what about the parents who had never heard of the condition and suddenly felt that their world had ended.
And so the wish for better education, advise, support and information became a mission for Natalie. She wrote and published a book directed at the parents of children with DDH, Cast Life- a parents guide to DDH, created a Facebook forum group and took the first steps in creating a charity to provide all the things she had searched for under one roof.
Initially known as Spica Warrior (named after the Spica cast which is used after hip surgery), the charity was set up using the story of Lucas and his journey toward healthy Hips
Now, a little over a year since the book and Spica Warriors birth, the charity is growing and maturing, a new name DDH UK was announced in November 2016 along with its first patron, ex Paralympic swimmer Gemma Almond who has had DDH since childhood, there is a 24 hour closed Facebook group with almost 500 members from all around the world, not just the UK, providing help, support, advice and sharing the tears and laughter with parents as they negotiate the Hip journey. DDH UK has a dedicated volunteer team working with parents to provide one to one support, a Paediatric Orthopaedic Consultant Surgeon onboard as medical advisor, the charity was invited to present at the Hip pain conference in Cardiff this year and has so many exciting projects and work collaborations in the pipeline for 2017.
What was once a dream for Natalie Trice is slowly becoming a reality, parents of children diagnosed with this potentially life changing condition are finding the emotional support, friendship and understanding that was so difficult to find before.
The work of DDH UK will continue to grow from strength to strength as the charity campaign for better awareness with both new patients and healthcare professionals and ultimately the hope that a national ultra sound screening programme at birth being something the charity are working toward.
visit the website www.ddh-uk.org