Angel and Ashleigh

Ashleigh is a courageous young woman, whose "fairy tale" has come true through Angel, her Disability Assistance Dog in training, who has begun alerting to oncoming seizures. Angel has provided safety and comfort to Ashleigh and has been learning to do tasks to help Ashleigh with the difficulties she faces in every day life, from her life-long, debilitating seizures. Read Ashleigh's inspiring story, and help her to raise funds to support Disability Assistance Dogs!

Ashleigh Bull is 18 years old. She was diagnosed with epilepsy initially at 11 & 1/2 months old. For much of Ashleigh's life her epilepsy has been kept manageable by medication with periods of time where medication needed to be adjusted to get to a point of functionality again and to reduce the impact on Ashleigh's quality of life. However, Ashleigh's seizures have never been fully under control with her having from 2 - 15 seizures every night and it has always been known that the seizures could increase in frequency and more significantly, severity. The specialist had always warned us to expect an increase with her seizures during puberty.

This came to pass as Ashleigh was 13 going on 14 with things getting progressively worse. Ashleigh worked very hard during Year 11 passing NCEA Level 1 with Excellence in 2015. By Year 12, 2016, Ashleigh was able to go to school less than 50% of the time and missed passing Level 2 by 9 credits. She still passed Art with Merit. In August of that year we were sent to Auckland for an Ictal (during seizure) SPECT scan to see if brain surgery might be an option for treatment. On our return Ashleigh was basically bed ridden for the next 2 months.

In October 2016 we started the Ketogenic Diet as therapy for her epilepsy and this has helped with Ashleigh's quality of life, to a degree, as she recovers from her seizures more quickly and they have reduced in intensity on a regular basis. Ashleigh has been able to return to playing sport, she tried school in 2017 but she was unable to manage this in a sustainable way, and she now is able to do some casual work with an understanding employers who know she works when she can. Ashleigh can have a highly functional and productive day today and tomorrow she may be in hospital as happened at the beginning of December after 5 generalised seizures in a row with only a short space of time between them. This is as good as it will get for Ashleigh without the treatment we are currently progressing towards.

Ashleigh has gone from a Canterbury Rep in Touch Rugby (2010 - 2018), Canterbury Football (2012 - 2014), Canterbury School Girls Rugby (2016) and being an Excellence student to not being able to plan anything with certainty, as after seizures she often struggles to walk without help for up to an hour or talk clearly for at least a day, has light sensitivity, terrible headaches and needs to sleep for most of the following day. It can take anywhere from 2 to 4 days to recover properly from her most severe seizures. She does still manage to play representative Touch - often due to sheer force of will to not let the seizures stop her.

In 2017 KURI Ltd Director and Founder Geoff Bowers teamed up with Ashleigh and Fiona, Ashleigh's mother, to train Angel the German Shepherd puppy to become Ashleigh's very own Assistance Dog specifically for nocturnal seizures, supported through Perfect Partners Assistance Dogs Trust and KURI Ltd.

Fiona and Geoff have tirelessly trained and worked with Angel everyday, every week and Angel who is coming up to be 1 yr old soon. Angel, as her name suggests, dutifully indicates/alerts when Ashleigh is about to seize, keeps her airways clear and open and keeps Ashleigh awake to prevent further seizures for occurring. Angel will hopefully be fully accredited around 2 years old as an Assistance Dog!

From her Ictal SPECT scan results the specialists spoke to visiting Doctors to the country and specialists in Australia. All thought surgery may be an option but that it was very specialized and more detailed information than we can get in this part of the world is needed. Due to this, Ashleigh's case was referred to The Cleveland Clinic in the USA in September 2016. At the end of November 2017 we heard that The Cleveland Clinic said yes to completing "further investigations". An application was put through to the Ministry of Health to fund the medical treatment for Ashleigh and the flights and accommodation for Ashleigh, her mother and father. We were notified at the end of January a contract has been signed between MoH and The Cleveland Clinic.

Ashleigh and her family to go to Cleveland on the 17th February for treatment. On speaking with the Doctor in Cleveland today, there will be 3 phases of treatment. The duration of treatment for the 3 phases is expected to be approximately 24 days. The hopeful outcome is that the onset of seizures is very localised in Ashleigh's brain and that this can be identified. If this is the case and there can be a "resection" (removal of the area of seizure onset) without being dangerous to Ashleigh i.e.no significant deficit to functionality; then the surgery can happen with the ultimate aim of Ashleigh being seizure free where she can live a full and functional life.

For Ashleigh to be able to go to Cleveland for treatment and have Angel is her "fairy-tale" it doesn't get much better than that, but one thing she does want.............. for others to have the same chance to know the comfort that she has with Angel by her side day and night through her seizures, to not be alone.

Today 15th of February Ashleigh has cut her beautiful long curls and will donate her hair to create wigs and some of our KURI Staff are shaving their heads. They ask you to donate towards or support fund for Perfect Partners Assistance Dog Trust clients