A little girl. A family holiday to Australia. An undiagnosed tick bite. A life-threatening illness.
This is the story of Ruby Penney and her fight with Lyme disease.
It is about a little 7 year old New Zealand girl who went from being active, bright and happy to being unable to count to ten, or to remember her ABC's, all the while having to endure up to 70 life-threatening seizures a month.
It is about a desperate search for a diagnosis, which didn't come for 7 months. Months of work went into treating symptoms without a diagnosis, critical time wasted for Ruby as the disease took hold of her little body and ran rampant without the correct drugs to halt it in its tracks. This turned out to be critical as early diagnosis leads to early, cost effective treatment, which would almost certainly have meant a cure.
New Zealand doctors need to be vigilant in detecting clinical cases of Lyme disease and co-infections. In general they are not.
So this is about awareness. Lyme disease is real. It is out there. You can get Lyme disease (Borrelia) along with other co-infections (Bartonella, Babesia, Rickettsia) and many more from a simple tick bite. Tick distribution is worldwide (excluding Antarctica). Lyme disease symptoms mimic other illnesses, making it hard to diagnose.
Ruby is now responding well to treatment, which she began in Australia in 2011. This treatment is very complex as her little body is also fighting a co-infection of Bartonella. The treatment is a fine balance of drugs which will lower the bacterial load and support and strengthen the immune system. The balance is tricky and getting it right is an unforgiving and constant struggle every day.
Ruby's disease has come at a huge personal cost to her family. They have lost an income as Ruby's mother Rachel has had to give up her job as a nurse to care for Ruby full time. Ruby's treatment is expensive, including monthly bills of $600 for antibiotics alone, plus a 2-month long trip to Australia to receive initial specialist and hospital care in 2011.
Now that Ruby's condition is more stable and she is improving from the treatment she received in Australia, it has been decided to set up a Trust to raise awareness about this disease in New Zealand and also to look for a cure. Ruby is to participate in a case study for the Trust; as will other patients as they come to light. It has been recommended, as part of the Case Study, that Ruby see a leading Lyme Specialist in the USA, where tick borne disease is more prevalent.
For more information see Further Medical Details