Haven Holley, 3, was diagnosed with of Doose syndrome in January.

At the tender age of three-and-a-half years old, Haven Holley has suffered from over 10,000 epileptic seizures.

Deep in her heart, Haven's mum Brenda Jones fears that time is running out for her precious little girl - who is now functioning at the level of a two-year-old.

The effects of the seizures have taken their toll on Haven's tiny body and brain.

It keeps Jones awake at night and every spare moment she has is taken up with talking to doctors, specialists and researchers - anyone who might be able to provide the answers she is so desperately seeking.

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TOM LEE/STUFF Haven has been approved to trial CBD oil with her first two doses paid for by a family friend and a woman in Saudi Arabia. The next hurdle is coming up with $1950 a month to continue the treatment (File).

But a glimmer of hope lies with Haven being able to trial medicinal cannabis oil.

Although Haven has been approved to trial CBD oil with her first two doses paid for by a family friend and a woman in Saudi Arabia, the next hurdle is coming up with $1950 a month to continue the treatment.

Latest studies show CBD oil can help children with refractory epilepsy, which is what Haven has.

Her pediatrician at Waikato Hospital, Eleanor Charmicheal, said she has one child that CBD oil seems to be helping.

In November last year, Stuff told Haven's story when she had been unofficially diagnosed with Lennox-Gautant Syndrome - a rare form of epilepsy.

However, Haven's original diagnosis was retracted and she was given a new diagnoses of Doose syndrome in January.

TOM LEE/STUFF Haven's mum Brenda Jones fears that time is running out for her precious little girl

At that stage, she had been prescribed four different types of anti-epilepsy medication, with little or no signs of improvement.

The next step for Haven was to trial the Keto diet, but the return of convulsive seizures at 1.30am earlier this year, caught Jones totally off guard.

Living that fear again spurred her into action.

She has approached Waikato MP Tim van de Molen, to see if there is any funding assistance available and talked to the local Morrinsville pharmacy about having a donation box on the counter.

"I've never wanted to ask for help, but I feel this may be the only chance Haven has," she said.

"Things are forever changing for us in this journey in the world of epilepsy. I guess you have to live it to really understand it."

If you would like to help in anyway please email brendaloveshaven@gmail.com.



