Tuesday 16 July 2019

Hope for Asseel (4) after consultant allows medicinal cannabis oil trial

Parents given hope of cannabis oil relief for son

Asseel Osman with his father Mahad
Asseel Osman with his father Mahad
Last week’s New Ross Standard

David Looby

The parents of a four-year-old New Ross boy, who appealed through this newspaper to Minister for Health Simon Harris to allow them to use cannabis oil to relieve his pain, have been told they can do a trial test using the oil.

Asseel Osman suffers from cerebral palsy and has daily epileptic seizures which can be as frequent as every seven minutes. He is one of the only children in Ireland to be completely bed bound as he is unable to sit upright.

His parents Zara and Mahad launched a campaign last week to get the HSE to provide Asseel with cannabis oil, saying without it his body will deteriorate to the extent he will never have any comfort or quality of life. Mahad travelled to see Asseel's consultant, Dr David Webb at Tallaght Hospital on Wednesday with a copy of his local newspaper and spoke of his frustrations with the doctor.

Asseel had an ECG and Mahad and Zara had been waiting months for the results, adding to their frustration.

Expressing concern that the only reason his seriously ill son was being deprived cannabis oil was due to the cost - which can run into the thousands - Mahad said Dr Webb furnished him with a letter saying that he doesn't have any other solution to Asseel's medical problems.

'They tried every medication on him. Dr Webb said he can't apply for a licence for medicinal cannabis for Assel yet. First I have to buy the cannabis oil abroad and bring it back and an ECG test will be taken after three months. Afterwards, when the cannabis oil is found to be effective, he will apply for the licence.'

Mahad said he doesn't mind having to travel to Germany in the coming days to buy the oil so long as his son can feel some relief.

Having developed cerebral palsy and epilepsy due to complications during his birth in Wexford General Hospital on March 11, 2014, Asseel came under the care of neurology specialist Dr Brian Lynch in Temple Street Children's Hospital from the tender age of five months.

In early 2015 Asseel became extremely ill. He spent periods hospitalised in both Temple Street and Waterford Regional Hospital. At one stage he was awake for seventy two hours and was constantly crying.

Hamad and Zara were told by doctors that due to the extensive level of brain damage he suffered, there were no real options available that could improve his condition and that would realistically enhance his life. The family were forced to travel to Giessen and Marburg hospital, in Limbruck, Germany.

To date only eight people in Ireland have been granted a licence to be able to use the oil. Mahad said he need to go to 'a secure doctor and not just buy it from a shop'.

Mahad said he has done everything in his power to help Asseel, whom he had to hold over a two-and-a-half year period to prevent him injuring himself. He plans to use either CBD or THC oil on Asseel.

'Whichever makes him more comfortable. Zara and I are happy. Asseel hasn't been sleeping much at all. When we hear him wake at 4 or 5 a.m. we get up and we also have very little sleep.'

Asseel's physiotherapist and occupational therapist have written to the minister describing how much improved Asseel was when he was being given cannabis oil.

Mahad said hearing that his son can once again have the oil has been like a weight lifted off his and Zara's shoulders.

'Our doors have opened up now and there is hope for our son who is a beautiful, sociable 4-year-old boy who deserves a rich and full life like any other child in Ireland. He is deprived of any quality of life due to the current legislation regarding medicinal cannabis. The granting of a licence to my son means everything to us,' he said in last week's article.

Asseel's parents have now been fighting for more than two years to access a licence for the medication he desperately needs. They have been updated on the requirements by Minister Harris's office.

'Without cannabis oil Asseel cannot use a wheelchair as his body is in spasm. This also causes him to twist uncomfortably when lying down, damaging his spine and limbs. He is confined to bed 24 hours a day and has to be drip fed. This is no life for Asseel, and it is devastating for us to witness his constant distress with no means of helping him.'

The trauma of seeing his brother in agony was too much for Asseel's younger brother who now lives mostly with extended family. Zara and Mahad hope that Asseel can once again avail of physiotherapy, a dietitian or occupational therapy when he starts taking the oil again. Wexford People Before Profit's Susan Breen has set up a Facebook page called 'Hope For Asseel' where updates will be posted.

New Ross Standard