Little Rupert Smith, who turns one later this month, was airlifted to hospital after his mother performed CPR on him in a Tesco store. The baby was diagnosed with alternating hemiplegia of childhood (AHC), an ultra-rare and incurable condition.
The Discovery
Rupert's parents, David, 40, and Siobhan Smith, 36, first noticed his eyes flickering when he was just two weeks old. Extensive testing initially came back normal. It was only after Rupert had to be resuscitated at six months that genetic testing revealed the condition.
Life-Threatening Episodes
Since then, Rupert has experienced multiple major emergencies. His mother performed CPR in a Tesco before he was airlifted to hospital. He now requires round-the-clock care for unpredictable seizures and paralysis.
Medical Support
Rupert is under the care of multiple specialist teams, including neurology, respiratory, and cardiology, spanning from Great Ormond Street Hospital to Alder Hey Children's Hospital.
Fundraising Efforts
The family is raising £1.5 million for emergency treatment in the US, research, and awareness. They have already raised £285,000. The funds will also support potential therapies like Antisense Oligonucleotide therapy and genome editing.
Family Life
Rupert has two brothers, George (6) and Henry (4). The family remains hopeful for treatment within 12 months and a cure in a couple of years. More than 50 landmarks will illuminate in 'Rupert's Rainbow' for his first birthday on 28 May.
