The family of a one-year-old boy who suffers with frequent and severe seizures say they are “running out of treatment options” for their son and have applied for a cannabis oil licence.
Jace Newton-Sealey from Swansea was born with the very rare genetic disorder Non-Ketotic Hyperglycinemia (NKH), which leads to abnormally high levels of the molecule glycine. As his body is unable to break down this amino acid, glycine builds up in his blood and the fluid around his brain. This affects his organs and brain and causes him to have seizures.
Jace’s mother Megan Webster and father Chris Newton-Sealey are worried for his life and hope that government-approved cannabis oil, which contains an anticonvulsant property, could improve his condition.
They will now have an agonising wait to hear back on whether their son qualifies for cannabis oil from the ‘expert panel’ set up by the Homes Office. Only a handful of patients have applied because of the prohibitive fees involved.