Billy Caldwell and mum ‘delighted’ to return back home
Thursday, 16 February 2017
"AS a family we feel so blessed and so grateful to everyone because they have really taken Billy into their hearts, it has been absolutely overwhelming. Billy is delighted to be home." - These were the word of Charlotte Caldwell speaking from her home in Castlederg yesterday morning (Tuesday), after she and her 11-year-old son returned home after a lengthy six-month stint in the US where Billy was receiving medical treatment for life-threatening epilepsy.
During his stay in Los Angeles, doctors had been treating Billy with cannabis oil (CBD/THC) which has been a great help in reducing the young boy's epileptic seizures and doctors are hoping that this treatment will also reduce the size of the lesion on Billy's brain.
There were fears a few weeks ago that Billy would have to become what is known as a 'cannabis refugee' due to the fact that CBD/THC treatment is not legal in Northern Ireland.
However, last week the Republic of Ireland's health minister, Simon Harris, said he was working to establish a scheme where the drug could be used to treat patients with epilepsy, intractable nausea and other illnesses which could be mirrored by the Northern Ireland Health Minister.
In the interim period, Charlotte says that Billy will be able to procure CBD/THC that can replace the supplement that he had been taking in America from Dr James Linden from Greenlight Medicine based in Dublin, which is legal in both Northern Ireland and the Republic of Ireland.
Speaking to the Tyrone Constitution on Tuesday, Charlotte explained: "First of all Dr James Linden is an Irish pharmacist and scientist and he has been in touch with me these last number of months and he has been working to find a way, that if we did bring Billy home, that he could provide 100 per cent legal CBD/THC for Billy and they have found a way round it. It's not just Billy who can now avail of it legally in Northern Ireland but everyone else who desperately needs it can get it through him so that is a huge step forward."
Last week the Northern Ireland Health Minister, Michelle O'Neill, contacted Charlotte on two occasions and vowed to do everything within her power to mirror the actions of the republic and would consider giving families access to CBD/THC on prescription.
Continuing Charlotte said: "Michele O'Neill is very aware of this and she has been talking to me to try and help us in any was she can and she actually said that she will do everything in her power to roll it out in Northern Ireland.
"It's not legal in the south yet, they can't write prescriptions for it, but it's going that way and she (Michelle O'Neill) will do everything to pass Billy's law in Northern Ireland.
"Going through Greenlight Medicine means that we have to pay for it, it's not that expenisve but everyone can now order it and he (Dr James Linden) will help with dosages as well. If Michelle O'Neill rolls it out people will be able to get it on prescription but at the moment those who need it can get it 100 per cent legally from Greenlight Medicine.
"A couple of people have been getting confused with CBD/THC. People have messaged me to say that CBD hemp oil is legal in Northern Ireland and the Republic of Ireland but the problem is that the level of THC that Billy requires is the illegal part, but Greenlight Medicine are providing CBD with THC, it's medicinal cannabis that he's receiving from Greenlight. We wouldn't be doing this if we could buy it over the counter."
In terms of his medical treatment in the US, bills have been racking up over the last number of months however, the Health Minister has also pledged to assist with the bills through a process called extra contractual referral (ECR) which would see the Health Department part paying the costs, relieving the family of some of the burden.
"We had applied for ECR in November," Charlotte said. "Pat Doherty had a meeting with the trust and they were informed that in situations like Billy's this is available based on the fact that there was no one here to look after Billy, he was turned away and on that basis they felt that Billy might be entitled to ECR.
"The medical bills are huge and we're by no means out of the woods. Michelle O'Neill assured me that she would do everything in her power to expedite the process. We still have to fund the rising medical bills and Billy's set back cost us in the region of $100,000 dollars and we're trying to get as much together as we can for his surgery."
In approximately eight weeks time, Billy will make the trip to LA once again to meet with doctors for a final brain scan before they decide on surgery.
"The plan is to return to LA and have what is hopefully Billy's last brain scan and Dr Nordli's medical opinion on what is next for Billy. And in those weeks we will be working with Pat Doherty and Michelle O'Neill to legalise medicinal cannabis and to find a pediatric epitoligist in Ireland who is willing to take over Billy's care plan long term."
According to Charlotte, Billy's condition is continuing to improve and she has spoken out to thank all those who have rallied around and donated much needed funds over the past few months.
"Billy is doing well, he's 20 days seizure free and he's engaging more, his social skills are improving and he's more balanced. There has been an incredible change and the important thing is that Greenlight Medicine can now provide all children like Billy, there are hundreds in Northern Ireland that have been through numerous pharmaceutical drugs that aren't working and they can now access CBD/THC. But not only people with epilepsy but people with cancer, parkinsons disease and MS, it's there now and it's just amazing.
"Without the help of Greenlight Medicine, Pat Doherty, Dr James Linden and Michelle O'Neill we wouldn't have been able to achieve this and to thank them is really important.
"And to thank the people who have donated and the hundreds of messages of love and support that I have received has been overwhelming and without them, we wouldn't be able to achieve this."
If you need to avail of CBD/THC you can do so by emailing: email@example.com.
To donate contact: 07540356389, 07968508250, 07749315345 or 07899910358.
You can find out more information on the Facebook page: Keep Billy Alive, or you can email: firstname.lastname@example.org.
You can also donate to Billy's Just Giving page: www.justgiving.com/campaigns/charity/just4children/keepbillyalive2.
You can also text 'Keep81 £3' to 70070.
You can sign the petition to legalise cannabis through the following link: www.change.org/cannabis-refugee-billy-s-law.
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