On April 6th, I attended the quarterly learning session at the Horton General Hospital – Oxford University Hospitals, to present to an audience of Medical Professionals. I spoke to them about my son Freddie and what it means to be disabled/ have special needs and to be undiagnosed. Having no known reason for your difficulties and the challenges we face as a family.
I shared our story to highlight the amazing work carried out by SWAN UK, supporting families whose children have no official diagnosis. SWAN UK is the ONLY DEDICATED SUPPORT NETWORK available for families like mine. It is really important that as many medical professionals as possible, learn more about the undiagnosed community and that there is support out there for those families.
I didn’t find SWAN UK until Freddie was two years old. Those first two years were incredibly isolating and frightening. They were also frustrating. I spent a huge amount of time on ‘Dr Google’ looking for the answers and looking for ‘another Freddie’. I wanted to know we weren’t alone and I wanted to know his prognosis. Constantly wondering if your child if life limited and how or if he will continue to progress is so stressful. I have now found others similar children, in presentation, to Freddie but as yet we still have no prognosis.
Did you know that around 6,000 children are born each year in the UK without a diagnosis to explain their disabilities and special needs?
Around 50% of the children having Genetic Testing through The NHS won’t receive a confirmed diagnosis.
Approximately 30-50% of children with severe learning disabilities/congenital abnormalities may not have a diagnosis to explain the cause of their disabilities.
SWAN UK offer 24/7 support to families at home and in hospital.
We run regular events to bring families together and make precious memories. Those events also allow siblings to make new friends who understand.
SWAN UK provides a lot of educational tools for both professionals and the families they support . This helps improve services so all families receive high quality coordinated care and appropriate testing/treatment. This is often very difficult to achieve without a diagnosis and coordinated care.
Undiagnosed Children’s Day 2017
We are in the month leading up to Undiagnosed Children’s Day on April 28th. On this day, SWAN UK (Syndromes Without a Name) will be highlighting all the services they provide to support undiagnosed families. We need to raise money to continue this support and we have another big target for 2017.
There are many many families out there living without a diagnosis and without support, who could benefit from being a part of SWAN UK. We know they are out there, we just don’t know where. Our target is to find them and double our membership. SWAK UK wants to support as many families as possible.
Thanks to The Horton General Hospital and big thanks to Clay Lowe for filming and editing my talk.