A teenage girl whose seizures were dismissed as anxiety has been left with brain damage at just 16 and remains unable to speak two years later. Rubie Boyton, now 18, had barely celebrated her sweet 16th birthday when she suffered a cardiac arrest in a park, leaving her brain starved of oxygen for 31 minutes.
The youngster from Ashford, Kent, had experienced two seizures prior to this, but her mother, Kim Tucker, says doctors attributed them to anxiety and carried out no further tests. It later emerged she had a rare heart rhythm disorder called catecholaminergic polymorphic ventricular tachycardia (CPVT), which affects just one in 10,000 people.
Two years after the devastating incident, Rubie remains unable to communicate or move and can only consume blended foods. Kim says the NHS has provided virtually no support. The 42-year-old claims physiotherapy is offered just once a month, forcing the family to fund their own treatments privately.
Mother's Anger and Regret
The mother of three said: "I feel sadness because Rubie didn't deserve this. The NHS therapy side of things has been pretty much non-existent, which has been really difficult to handle because I just thought, 'why is everyone giving up on her?'"
"I am so angry. 111 said she should take some paracetamol and she would be fine. I am really annoyed that they didn't tell her to get looked at." She added: "I don't know why I didn't push for more tests. I thought that if that's what the GP was telling me then they must know. I am angry at myself as well that I didn't ask for more."
CPVT is believed to be inherited from a parent through a faulty gene and can trigger an abnormally rapid heartbeat when brought on by physical or emotional stress. Rubie's condition was triggered in May 2024 while she was out with friends and the group was confronted by another group of girls in Bridgefield Park near her home.
Remarkable Progress Despite Challenges
After Rubie collapsed, a courageous friend performed CPR until the teenager was airlifted to King's College Hospital in London and placed in an induced coma. Since coming round, Rubie has been unable to communicate and suffers from dystonia, a movement disorder. Nevertheless, Kim says she has shown remarkable progress, even regaining some reflexes in her hand. The teenager is also attempting to speak, though no sound has yet emerged, and she is currently able to communicate through blinking.
Kim said: "Rubie has made massive improvements. I think because I see her every day I sometimes don't see the improvements, but I look back on videos from hospital and it is a massive change. She is so much more aware. She is moving more purposefully than she was before."
Family Sacrifices and Community Support
Despite receiving care four days a week, the family are largely having to care for Rubie themselves, meaning her mother and stepfather, Simon, were forced to give up their jobs at a local golf club. Rubie is taken for high-dose oxygen therapy twice a week and physiotherapy once a week, with hopes of starting hydrotherapy in the near future. Kim said: "We are just trying anything really, we want to give it all a go and see if it makes a difference. I don't think she will get back to where she was before or even close. It has been such a hard journey for me. We just cope the best that we can. I am grateful for the carers that do come in and give us a hand."
The most significant change over the past two years has been a £50,000 extension to their family home, which provided Rubie with her own wet room, a kitchen for the carers, a bedroom with a TV, and a patio. This was only made possible through a £30,000 disabled facilities grant and volunteers who carried out work free of charge after coming across Rubie's story online.
Kim says the family are now working hard to raise further funds to cover their daughter's treatments, as the NHS does not fund them. She said: "I know that building work is expensive, but I think we underestimated how much it was going to cost us. The love and support that people have given her and us as a family has just been so nice. There are just no words to describe how grateful we are at the kindness that some people show."
