A Derry mother whose 10-year-old son suffers from a rare life-limiting disease has appealed for donations to help get him to America to avail of cannabis treatment that is illegal here.
Lynda McIntyre’s son, Cian, suffers from A-T (Ataxia-Telangiectasia), which is a rare and complex genetic disorder that affects a number of different systems within the body.
A-T has many symptoms including difficulty with movement and co-ordination, a weakened immune system and an increased risk of cancer. Many sufferers die before their 20th birthday.
Lynda said that Cian’s condition is declining and that there is no specific treatment available for his illness but rather a fragmentary approach to treating facets of his condition with medicines for a number of different ailments.
“Cian has A-T, there is no cure and there is no treatment, he is only being treated for other conditions that make up his condition like cystic fibrosis, cerebral palsy, multiple sclerosis, immune deficiency and in his case, recently anxiety and depression,” she told the Derry News.
“There is no actual specified treatment for his condition. When he has a chest infection they’re using medication for cystic fibrosis and the drugs that they would use for tremors would be for Parkinson’s.
“It’s guessing, whereas there is a family in Canada and other families in other parts of the world who have been using cannabis oil and it’s working for them.”
Lynda has been in contact with the Thompson family from Canada for some time. Their son, Linkoln and daughter, Bentleigh, both suffer from A-T.
Linkoln, who is the same age was Cian, was beginning to decline but began using medical marijuana on September 18, 2014.
Since then, the family have seen amazing results and posted videos of the difference the use of medical cannabis is making to their son’s life.
Lynda wants to give Cian the best life possible by giving him this opportunity but, due to the laws here, medical marijuana is not available to him.
“It’s hard when I see that Linkoln’s been using it and is still steady on his feet, walking and Cian has just gotten worse,” said Lynda.
“It’s not fair. Linkoln is able to use cannabis and is walking about unaided whereas my son can’t get to the toilet on his own. The Thompson’s are going to tell me the prescription they are using for their son and that’s something I want to look into in San Francisco.
“There’s an A-T clinic in Baltimore so I’m going to try and get an appointment to go and see them. I want to see the specialists over there because Cian will be due an appointment and he usually goes to Nottingham, England.
“We could see how they do things and speak to their neurologist, their physio, their occupational therapist. We could seek their advice too.”
Lynda added: “We can’t do any more for Cian here so I want to go San Francisco but we need help. The flights are over £1,000 each and then we are going to need money for the length of time we stay over there.”
Lynda said her one wish is to give Cian a fighting chance: “I'm asking for help as a mother to help me take my beautiful brave boy to San Fran for a few months.”
“This will help Cian live a longer happier healthier life and will keep him with me longer and in this world for longer than the doctors’ prognosis.
“I refuse to just give up and let life run its course. Please help us get there.”
Lynda has set up a GoFundMe page to raise money to take Cian to America to help alleviate his symptoms and give him a better quality of life. A number of local people are also liaising with her to run fundraising events to help raise the money needed to take Cian to the States.
If you would like to donate you can donate to Going Green for Cian at www.gofundme.com/pppn2atn or you can contact Lynda on 07751826450.
If you have a story or want to send a photo or video to us please contact the Derry Now editorial team on 028 7129 6600 for Derry City stories Or 028 7774 3970 for County Derry stories. Or you can email firstname.lastname@example.org at any time.