Steven Robert Peek is a carpenter and father Brisbane. From 2008 until 2017 was a full time carer for his little daughter Suli.
Suli was a normal infant but by nine months of age she started developing feeding problems and at 12 months of age contracted influenza A resulting in pneumonia. Whilst in hospital she also contracted swine flu. Suli started to regress and had her first seizure at 15 months of age. Then began a downward spiral of regression, hospital admissions and between 100 to 200 tonic clonic seizures per day. Despite using large a number of anti-convulsant medications and suffering horrendous side effects Suli was never seizure free.
In April 2015, when all other pharmaceutical options had been exhausted and in desperation to relieve Suli’s suffering, the family decided to try Medicinal Cannabis. They noticed immediate improvement…..she did not have to suffer the severe side effects from the medications, she was more alert and happier and, did not require a hospital admission for more than a year with a ninety percent reduction in seizures.
For the last years of Suli’s life (and since) Steve and his wife have been passionate advocates for Medicinal Cannabis. Up until the time of Suli’s death, they fought the Queensland bureaucracy for legal access to Medicinal Cannabis. Suli’s legacy would see all children with intractable epilepsy given the right and opportunity to try cannabis as a legal alternative. Steve joins the board of UIC as a parent who has walked the walk and who wishes to honor Suli by promoting more compassionate access to medicinal cannabis so her suffering was not in vain.
In 2013 a lesion was found on her brain which they suspected was a tumor and because the risk was too great a biopsy was out of the question so it was monitored and after 8 months on Cannabis oil it disappeared Despite this Suli still continued to regress but the cannabis was helping her maintain a reasonable quality of life but with the regression came other problems which were compounded by the damage done by long term use of anti convulsants and the Keto diet.
On the 19th of October Suli was admitted to hospital because of stomach problems and not being able to tolerate the specialized diet she was on and was being trialed on a new formulae. On the 21st of October 2017 at nine years of age Suli died suddenly and unexpectedly in hospital and her death is now being investigated by the coroner. For almost 3 years since starting on cannabis I have advocated for Medicinal Cannabis to be used in the hospital.
For two years we have been trying to access a legal Medicinal Cannabis product a 1 to 1 ratio CBD/THC medication and despite the help of Teresa Nicoletti and Mills Oakley all our efforts were blocked by Qld Health and the Hospital. Suli died unable to access a legal MC product and was diagnosed with Rett Syndrome three months after she died. With the help of Teresa we have applied to the coroner for a full inquest in the hope of finding out why a legal MC product containing THC cannot be accessed in Qld.