Reuben Disley

Reuben Disley

A small British boy with alobar holoprosencephaly.
Country: Great Britain

Biography of Ruben Disley

Ruben Disley, a little British boy, was born with a rare condition called alobar holoprosencephaly, which causes the brain to not develop properly. This condition affects only one in every 7,500 infants in the UK. Ruben's head was almost the same size as an adult's, making it unlikely for him to speak or walk. Despite the challenges he faces, Ruben's family has hope for his future, as his aunt Lydia, who also has the same condition, has lived for five years.

Reuben Disley

Ruben's parents, Alice Hilli and Dylan Hilli, were shocked to discover that their son had the same condition as his aunt Lydia. They had not expected this rare genetic disease to be passed down to Ruben. However, they remain hopeful, as they have seen Lydia's incredible progress and development. They believe that Ruben will follow in her footsteps.

Reuben Disley

Ruben was born on June 3, 2016, at 34 weeks gestation, through a cesarean section due to the size of his head. His head circumference at birth was 44 cm, which is approximately 10 cm larger than average. Ruben's family spent several weeks in the hospital, where he underwent surgery to drain some of the fluid that had accumulated in his brain.

Reuben Disley

Currently, Ruben's development and abilities are severely delayed. It is unlikely that he will be able to walk or speak. However, his family remains committed to providing him with the best care and support possible. They are currently raising funds for a sensory room for children with disabilities, as they have seen the positive impact it had on Lydia's development.

Reuben Disley

Alobar holoprosencephaly is a congenital anomaly that affects the early stages of fetal development. The front part of the baby's brain is unable to divide into distinct halves. This condition can lead to a small head, excessive fluid accumulation in the brain, facial abnormalities, learning difficulties, epilepsy, and other health complications. The exact causes of alobar holoprosencephaly are still unknown, and there is no cure for the condition.

Reuben Disley

Despite the challenges Ruben faces, his family remains hopeful and dedicated to his well-being. They cherish every moment with him and are determined to provide him with the best quality of life possible.

Reuben Disley

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