Please end our son’s pain
THE PARENTS OF A BOY WHO CAN’T SIT UP DUE TO HIS ENDLESS SPASMS HAVE LAUNCHED A CAMPAIGN TO ALLOW HIM TO BE TREATED WITH CANNABIS OIL
THE parents of a four-yearold New Ross boy who is in constant pain have launched a campaign to get the HSE to provide him with cannabis oil, saying without it his body will deteriorate to the extent he will never have any comfort or quality of life.
Assel 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.
Lying in his blue and green hospital bed surrounded by baby pull toys, his drip and a BUMBLEance bee – curled up, spine arched forward in spasm – Assel’s low moans are the only sound to be heard, apart from some comforting words issued wearily from his parents Hamad and Zara.
Having developed cerebral palsy and epilepsy due to complications during his birth in Wexford General Hospital on March 11, 2014, Assel came under the care of neurology specialist Dr Brian Lynch in Temple Street Children’s Hospital from the tender age of five months.
Every six months his medication programme was changed in the hope of finding a treatment that would ease his condition, but to no avail.
In early 2015 Assel 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 at Blackrock Clinic 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.
By March Assel lost his ability to eat and drink, and in desperation the family were forced to travel to Giessen and Marburg hospital, in Limbruck, Germany.
After extensive tests their care team immediately stopped the large amounts of medication Assel had been prescribed in Ireland and began treatment with cannabis oil.
‘The results were immediate and profound,’ his father Mahad said. The doctors in Germany did tests and they discovered that Assel has serious brain damage. They said he needs cannabis oil to stop his seizures.
At his home at Irishtown Heights, Mahad said: ‘We were the first in Ireland to bring cannabis oil into the country. That was 2015 and May 2015 was the last time Assel got to use it. We brought it in illegally and when we went to the hospital Assel could be brought in in a wheelchair.’
Finally the boy had respite from the seizures. He could sit upright in a wheelchair or buggy and could lie comfortably in a bed for the first time. Life was unrecognisable to Assel and his family for the six weeks he had access to cannabis oil, and his deterioration back into ill health post treatment was equally apparent and heartbreaking.
‘We are being treated like Irish citizens but when your child is sick it’s very hard. If any child is sick – on humanity grounds we’d appeal for help. Assel is the only child in Ireland like this.’
On their return from Germany, Assel began attending Our Lady’s Hospital in Dublin. Despite having letters and results from the German consultants which explicitly showed the positive impact of the cannabis oil treatment, the family were told the only option in Ireland was to continue to try other medications.
They explained that Dr Lynch attempted this from when Assel was five months to almost two years of age and at that point his parents were told that there were simply no options left, but they were told it was the only treatment available.
Mahad and Zara had no choice but to follow a new protocol, but Assel’s condition rapidly worsened and this process has continued since. Earlier this year Our Lady’s Hospital gave them the terrible news that once again, there were no more options available for Assel.
Assel’s parents have now been fighting for more than two years to access a licence for the medication he desperately needs.
‘Without cannabis oil Assel 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 Assel, and it is devastating for us to witness his constant distress with no means of helping him,’ Hamad said.
The trauma of seeing his brother in agony all of the time was too much for Assel’s younger brother who now lives mostly with extended family.
Assel’s family are campaigning for a licence to access the drug that is fully recommended by German specialists as the solution to bring some comfort to the young child’s everyday life. ‘There are currently eight licenses for medicinal cannabis granted to patients in Ireland – two of which are for children. Why is there no access for our exceptionally vulnerable little boy?’ Hamad said.
‘Our son 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. I will not stop fighting to secure the future that my son or any child deserves, that of a happy childhood is within reach but is being denied by the HSE.’
Originally from Somalia, Mahad has lived in New Ross for a decade. He moved here due to the violence in Somalia, where his father was murdered. ‘We are Arabs, a minority group in society. It’s always bad news from Somalia.’
He was awarded citizenship and applied for his wife Zara, from Ethiopia to join him.
‘When you have a disabled child, you get many experiences. I am here with Assel 24/7. I had to hold him from when he was a baby up until he was two-anda-half otherwise he would bend himself back and injure himself. I did that every day until he fell asleep. When I had to go to the toilet Zara held him.’
Assel was tube fed, but this didn’t always work.
‘The doctors in Germany said if he is treated when he is small they have a solution but when he gets bigger it gets harder and harder to treat. We are doing our best. We feed him milk and water through a tube, but he is fighting and even in his sleep sometimes. He is 26-and-a-half kilos now and it takes two of us to change and lift him. The only time he leaves the house is to go to the hospital. He is getting no fresh air.’
Assel can’t avail of physiotherapy, a dietitian or occupational therapy because of the seizures.
‘He can’t sleep some nights. They don’t trust parents but we know our child. I may not be a certified nurse but I am a nurse for all of this. The people in Jack & Jill and BUMBLEance have never seen a child like Assel. We have a €6,000 wheelchair we got from the hospital and it’s never been used as Assel can’t sit down. I am fighting so my child can walk. I want him to be able to go to school and to be able to travel with him. Like any parent.’
Lips quivering and with tears in his eyes, Hamad said: ‘If there is another medicine available we will try it. I just want my son’s pain to stop. We were told by his consultant that they would have something within six to eight weeks and then he came back and said he couldn’t do anything for Assel. Why do doctors lie to me and how can they see my son and do nothing? We are still here and Assel is still deteriorating. I feel very sad. We don’t have any life because our son doesn’t have any quality of life.’
A local GP visits Assel every six weeks and prescribes antibiotics for his chest infection.
‘There is no plan for Assel. His spine curvature is getting worse,’ Hamad said, as his wife, rubbing Assel’s leg, sobs and wipes a tear from her eye.
Breaking down Hamad said: ‘Nobody wants to talk about the truth. This child needs medicine. He beats himself blue and can’t go to the toilet. I have to put him in a bath of freezing water to make him go. That was on a nurse’s advice. He is an Irish boy. Give him treatment please! I can’t buy cannabis oil on the streets!’
Campaigning alongside this family is Wexford People Before Profit representative Susan Breen, from Dunganstown.
Susan said: ‘Assel deserves a bright future, the government’s rigidity on the issue displays a total lack of humanity towards this vulnerable young child. Every seizure Assel suffers causes further damage and immense distress. It’s just barbaric! This is sheer neglect on the part of the state. They are withholding life-changing medication. We demand Assel be allowed the treatment he desperately needs and we are ready and willing to fight until it is granted.’
Susan said it is disgraceful parents like Cork mother Vera Twomey have to give up years of their lives to get cannabis oil for a child.
She said between the cost of travelling abroad and the cost of the medicine, people like Assel’s parents aren’t able to afford to travel to ease their child’s pain.
‘Assel’s parents have contacted Simon Harris’s office and have knocked on every door but they have been fobbed off at every turn.’
WITHOUT CANNABIS OIL ASSEL CANNOT USE A WHEELCHAIR AS HIS BODY IS IN SPASM