About TBCD Disorder
TBCD is a severe and unpredictable neurodegenerative genetic disorder. The majority of those with a TBCD disorder will have symptoms present from birth. TBCD children experience early onset hypotonia (muscle weakness), epilepsy, global developmental delay, missed development milestones and, in many cases, feeding difficulties.
In the UK, Trio Exome Sequencing became available in January 2021. It is the only genetic test available that dives deep enough to find genetic conditions like the TBCD disorder. Sadly since the Trio Exome sequencing became available the TBCD numbers continue to rise.
The heartbreaking truth is its unlikely for children with TBCD to make it to their 5th birthday.
A Life For Leo Foundation are in a race against time to raise funds to back cutting edge research to pioneer new treatments to save our children.
Mission
BBC South East News
Our mission is to be the voice for patients, families and carers living with a TBCD disorder.
Patients with recessive TBCD gene mutation have often endured a long delay to diagnosis which impacts on long-term health and quality of life. The TBCD disorder is an ultra Rare genetic condition which affects less than 20 children worldwide, so often leaves families feeling vulnerable and isolated with little support.
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Vision
A treatment or cure does not currently exist for the TBCD disorder but through advocacy and research we are committed to fund the creation of one. We aim to improve the lives of all children affected.
Our fight together is stronger.
