‘It’s given me back my right to hope as a mummy’ – Mother of first boy to legally receive cannabis oil prescription
Ms Caldwell, who is from Castlederg in Tyrone, told Independent.ie that she enjoyed a healthy pregnancy with Billy and that there were no issues during the first few months of his life. When Billy was six months old he suffered his first seizure, where he was diagnosed with intractable and status epilepsy, which cannot be controlled through medicine or diet and he cannot come out of seizures himself without rescue medicine and oxygen.
After two months his devastated parents were advised to bring Billy home to die but they refused to give up. Following a lot of research Charlotte (49) found out that Billy wasn’t being treated by the correct specialists, following further analysis she came across a doctor in Chicago in 2007 who could help her then-two-year-old boy.
She said: “We had to raise £250,000 for us to fly over there, for the treatment and to support us. “At that stage Billy couldn’t hold his head up poor pick up items but he had twenty hours a week of intense physio and he grew stronger and his co-ordination improved, he was like any other healthy toddler.”
Read More: Irish mum and sick son left homeless in LA over mounting medical bills
Billy and Charlotte returned home after two years in the US in 2009 after Billy’s seizures went into remission but sadly they returned again last summer. Devoted Charlotte, who is Billy’s full-time carer said: “His seizures returned with a vengeance in June 2016, he was having up to 30 a month and any of them could have been fatal.
“I would call Billy’s seizures silent killers because he doesn’t have convulsions or make much noise it was more like a gentle rocking, so I would have to sleep in the beside him with my arm around him just in case he had one during the night. “He would need 24-hour care and if he got a seizure you would have to be ready to act because if a seizure lasts for longer than six minutes it can cause brain damage or even kill a child.
“We tried to access services in the North, in the Republic, in the UK, even in France but they all had at least a nine month waiting list and I knew Billy’s seizures were too bad and it would only be a matter of time until one took him.”
It was then she decided to get in touch with his doctor from Chicago, who had moved to LA. The Caldwells decided their best option was to return to the US for treatment last September.
She said: “It was a massive gamble as it was an eleven-hour flight and I was terrified something could happen to Billy but I was a desperate mummy who would do anything to save him. “In the US they discovered that a lesion on Billy’s brain was causing the constant seizures.
“Surgery would have meant Billy could lose his speech and memory and all the skills he had learned. “The doctor recommended cannabis oil, he was on pharmaceutical medicine so we had to establish whether he could tolerate CBD by starting with a microdose. “It was a slow process and like any medicine it had to be carefully supervised by doctors, he showed immense improvement though, thank God.”
Read More: Family claims terminally ill Irish teen’s condition improving with Cannabis oil: ‘We would do anything to help her’
Charlotte says that Billy is now “99 per cent seizure free-seizure” and has only suffered two in 200 days. The Caldwells returned to Ireland in February and Billy was the first child in Ireland and the UK to be able to receive his Cannabis Oil prescription through his own pharmacist. The Caldwells raised over £200,00 for their second stint in the US and they are now planning to donate what they don’t need to help fund the treatment of terminally ill Tina McElligott (16).
The Kerry teen is the oldest living person in the world with Alpers, a rare degenerative neurological condition and symptoms can include seizures, intellectual disabilities and stiffness of the limbs. She is currently undergoing cannabis oil treatment in Spain, which her family claim has immensely improved her condition. Charlotte became pals with Tina’s mother Mags online, who is fundraising to support her daughter.
Charlotte said: “Mags contacted me when she read Billy’s story, we became extremely good friends. “She’s an amazing mum and Tina is incredible, she really touched my heart. “It got to a stage where we had Billy’s bills paid thanks to the generosity of the public.
“I explained Tina’s situation to people who had planned to hold events for Billy and they were so kind and said they would be delighted to help, I’m also liaising with her doctors about how to get how prescription transferred to Ireland when she’s well enough to return home.” Read More: Tina responding ‘very positively’ to cannabis oil but funds still needed Tina McElligott, pictured here with her mother Mags, is said to be responding very positively to the cannabis oil treatment
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