Introducing Ashleigh

KURI has a very special person to introduce to you all, Ashleigh. Sometimes you may speak to Ashleigh over the phone at the KURI call center, see her at our front desk, Ashleigh is also our assistant groomer! We are so proud of you Ashleigh, you are an absolute inspiration, tough as nails.





Ashleigh has a story to tell and it begins here.........

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 generalized 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.

Portrait by Ashleigh Bull 

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 on Friday 26th Jan a contract has been signed between MoH and The Cleveland Clinic.

Image By Ashleigh Bull

On Sat 17th of Jan we leave for Cleveland 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.

Fiona Ward, Ashleigh's mum.

To be continued.....