Partaap, a six-year-old boy from Wolverhampton, has been diagnosed with an extremely rare variant of Juvenile ALS, a type of motor neurone disease (MND). Doctors believe he is the youngest person in the UK living with this condition, which has reportedly been diagnosed in only 40 to 50 children worldwide.
His parents noticed the first signs early last year when Partaap began struggling to stand and walk long distances. Genetic test results in January confirmed the diagnosis, and doctors advised focusing on palliative care as there is no cure or treatment for his condition.
Partaap's family is now attempting to raise £1m to fund specialist treatment in the United States. They state this treatment has not previously been developed for his specific gene variant. His mother, Gurbinder, emphasised the urgency, stating, "Every month that passes, we risk losing more of our son's abilities."
Childhood MND is rare, but like in adults, it causes messages from motor neurones to gradually stop reaching the muscles that control movement, according to the MND Association. The charity also noted that childhood forms of the disease are often linked to changes in genes, which may allow for treatments targeting the faulty gene, such as antisense oligonucleotides (ASOs).