Why this boy’s par­ents are fight­ing for him to use med­i­cal cannabis

The Courier-Mail - QWeekend - - FRONT PAGE - Story JANELLE MILES pho­to­graph rus­sell shake­speare

Four years of life-threat­en­ing seizures have pushed Lachie Miles and his fam­ily to the brink. Medic­i­nal cannabis oil COULD RE­LIEVE HIS CON­DI­TION … IF ONLY IT WERE LEGAL.

Not here, not now. My teenage nephew Lach­lan Miles lies un­con­scious on the floor of the chapel in the Gar­den of Re­mem­brance at the Toowoomba Cre­ma­to­rium, 100km west of Bris­bane, three me­tres from his 95-year-old great-grand­mother’s cof­fin. Rita Do­ran, af­fec­tion­ately known as Dor Dor to her grand­chil­dren and great-grand­chil­dren, is be­ing farewelled by about 30 fam­ily and friends. Lach­lan and Rita were par­tic­u­larly close, de­spite their 81-year age dif­fer­ence. As her health de­te­ri­o­rated in her fi­nal years, he vis­ited her of­ten, em­pathis­ing with her frailty, while also con­fronting the pos­si­bil­ity of his own death. The bene­dic­tory prayer has just fin­ished when Lachie col­lapses into my brother Greg’s arms and stops breath­ing.

“May you find strength and sup­port in your love for one an­other. And may you find con­tent­ment and peace in your hearts. Amen.”

As triple 0 is called and the chapel is evac­u­ated, Greg and his wife, Rhonda, are kneel­ing on the floor next to the youngest of their three sons, shak­ing him and des­per­ately will­ing him to breathe. Lachie turns blue as the oxy­gen lev­els in his blood plum­met. “Breathe, Lachie, breathe,” Greg pleads. “Not here, not now,” Rhonda says. My sis­ter-in-law has just said good­bye to her grand­mother, the woman she de­scribes as one of her best friends. The thought of los­ing her son on this, of all days, is un­bear­able. “I was fran­tic,” she re­calls. “I re­ally thought he was go­ing to die that day. All I could think of was that I was bury­ing my grand­mother, and my child might well die next to her cof­fin.”

Ev­ery­where Lachie goes, a big red bag fol­lows him. It’s been taken to foot­ball games, to the movies, fam­ily wed­dings and on fish­ing trips. It was out­side the chapel in the fam­ily car dur­ing Rita’s fu­neral on April 1 last year. The bag con­tains re­sus­ci­ta­tion equip­ment – oxy­gen, drugs, tubes, nee­dles. A mon­i­tor that clips to his fin­ger mea­sures his heart rate and the oxy­gen lev­els in his blood. Greg, a med­i­cal lab­o­ra­tory sci­en­tist with Pathol­ogy Queens­land, and Rhonda, who ran her own town-plan­ning busi­ness be­fore Lachie’s ill­ness, have been trained to deal with his emer­gen­cies un­til paramedics can get to him. By the time an am­bu­lance ar­rives and stops be­side Rita’s beloved EH Holden Spe­cial, which has been parked out­side the chapel for her ser­vice, Lachie is still un­con­scious, but he’s breath­ing again. He’s taken to Toowoomba Hos­pi­tal un­der lights and sirens, as he has been dozens of times be­fore. Hours later he re­cov­ers and re­turns home to sleep off the drugs used to save his life. Un­til the next time. It’s a dra­matic day in four years of dra­matic days. LACHIE WAS A POPULAR, HAPPY AND HEALTHY 11-year-old, an above-av­er­age stu­dent in Year 6 at Toowoomba East State School who loved play­ing soc­cer and prac­ti­cal jokes, tigers, and the colour yel­low, when he had his first seizure on July 21, 2011. Greg and Rhonda had kept him home from school that day. He was com­plain­ing of aching mus­cles and a fever. In the hour lead­ing up to Greg find­ing him un­con­scious on the lounge in front of the fire­place in their three-storey home, with views of the Toowoomba Range, Lachie had been alone in a spa bath.

“He could have drowned that morn­ing,” Greg says. “When I walked in and found him in the lounge room, he was shak­ing, froth­ing at the mouth and blue. I rang an am­bu­lance and just held him.” In that mo­ment, the idyl­lic life Greg and Rhonda shared with their three sons ended, mark­ing the be­gin­ning of what Rhonda de­scribes as the fam­ily’s “four years of hell”.

Since that day, Lachie, now 15, has had close to 80 pro­longed seizures, known med­i­cally as sta­tus epilep­ti­cus – those that last 30 min­utes or longer. In his case, some have con­tin­ued for up to three-anda-half hours. His heart rate has dou­bled to 155 beats a minute dur­ing seizures, putting him at risk of a car­diac ar­rest. He’s re­quired life sup­port seven times, been flown by emer­gency he­li­copter from Toowoomba to Bris­bane on three oc­ca­sions, and is no longer well enough to go to school. Three times, his mother has found him un­con­scious in bed, and feared he had died in his sleep. Even when Qweek­end ar­rived for a re­cent photo shoot, he had a seizure and was taken to hos­pi­tal, un­con­scious. The shoot had to be resched­uled five days later.

To keep him alive, Lachie has to be watched 24 hours a day. When the strain on the fam­ily be­came un­bear­able in mid-2013, Dis­abil­ity Ser­vices Queens­land pro­vided fund­ing for car­ers at night. Greg, 47, and Rhonda, 46, are grate­ful for the help they’ve re­ceived. Twice, how­ever, car­ers have fallen asleep on the job. “It’s hard putting the care of your child in some­one else’s hands,” Greg says.

Within weeks of Lachie fall­ing ill, he started bal­loon­ing in weight, trans­form­ing from a stick of a kid, weigh­ing 41kg, to more than twice that size in less than a year. Doc­tors have few an­swers. There is no known his­tory of epilepsy on ei­ther side of Lachie’s fam­ily. Although he had tested pos­i­tive to in­fluenza af­ter his first seizure, no ev­i­dence of the virus was de­tectable in his cere­brospinal fluid to in­di­cate it had at­tacked his brain. Tests for other in­fec­tious dis­eases proved neg­a­tive. Days be­fore the be­gin­ning of Lachie’s med­i­cal cri­sis, my brother’s fam­ily, in­clud­ing older sons Con­nor, then 13, and Alexander, 15, had ar­rived home from a hol­i­day to Malaysia. De­spite spec­u­la­tion he might have had vi­ral en­cephali­tis, it’s turned out to be one of many med­i­cal blind al­leys.

No fewer than 11 anti-con­vul­sant med­i­ca­tions have been tri­alled. None works. Lachie is among the 30 per cent of pa­tients whose seizures fail to

To watch Lach­lan decline phys­i­cally, ment all y and emo­tion­all y can onl y be de­scribed as watch­ing your son be­ing tor­tured.

rhonda MILES

re­spond to pre­scribed drugs. In April last year, soon af­ter Rita’s fu­neral, sur­geons op­er­ated to im­plant a va­gal nerve stim­u­la­tor in his chest. Like a heart pacemaker, the de­vice sends intermittent elec­tri­cal sig­nals via the va­gal nerve, on the left side of his neck, to his brain. It pro­vides no respite. Af­ter scans in­di­cated a cyst in his pi­tu­itary gland had al­most dou­bled in size since its dis­cov­ery fol­low­ing his first seizure, he had more surgery in Au­gust to drain it. As a re­sult, the vom­it­ing that had plagued Lachie al­most ev­ery day since he first be­came ill has dis­si­pated and he has started to lose weight. He con­tin­ues to have vi­o­lent seizures ev­ery cou­ple of weeks but, in some cases, he re­quires fewer “res­cue” drugs to dampen the elec­tri­cal ac­tiv­ity in his brain and bring him out of the con­vul­sion. The surgery has pro­vided par­tial re­lief, though while he’s still hav­ing seizures his suf­fer­ing is on­go­ing, and his fam­ily will not give up search­ing for an­swers.

The psy­cho­log­i­cal battle, at times, is as dif­fi­cult as the phys­i­cal one. “My seizures bully me,” Lachie says. He has short-term mem­ory loss, is so­cially iso­lated and re­peat­edly tells his mother: “I want to die.” His level of hope­less­ness is such he’s asked her, in vain, to sign a “do not re­sus­ci­tate” form on his be­half. “The stress of deal­ing with a se­ri­ously sick child is at times al­most too much to bear,” Rhonda says. “To watch Lach­lan decline phys­i­cally, men­tally and emo­tion­ally can only be de­scribed as watch­ing your son be­ing tor­tured.” She tells doc­tors: “If he dies, I want to be able to stand at his fu­neral know­ing I’ve done ev­ery­thing I pos­si­bly can.”

While the fo­cus is un­der­stand­ably on Lachie, the im­pact of his ill­ness has had a rip­ple ef­fect – more like a tsunami – en­gulf­ing all his fam­ily. Greg and Rhonda, who have been mar­ried 25 years, en­joy lit­tle time alone to­gether. They have limited time to in­vest in their other chil­dren. Rhonda spent more than half of 2012 in Bris­bane, while Lachie was in hos­pi­tal, away from her other sons. Alex, now 19, still man­aged an OP1 and won a $120,000 schol­ar­ship to Aus­tralian Na­tional Uni­ver­sity in Can­berra to study en­gi­neer­ing and busi­ness. Con­nor is in Year 12 at Down­lands Col­lege. “They’ve had to deal with Lach­lan’s emer­gen­cies at three or 4am, watch him be­ing re­sus­ci­tated and taken off by am­bu­lance, and then go to school,” Rhonda says. “They hold down part-time jobs and they get on with life. We have re­ally tried to in­stil in them that, no mat­ter what’s thrown at us, we keep go­ing, we spend ab­so­lutely no time feel­ing sorry for our­selves. That’s wasted en­ergy.” THE QUEST FOR MORE OP­TIONS FOR LACHIE has led his par­ents down an un­ex­pected and con­tro­ver­sial path. From their home on the con­ser­va­tive Dar­ling Downs, af­ter ex­haust­ing ev­ery­thing con­ven­tional medicine has to of­fer, they have be­come un­likely po­lit­i­cal cam­paign­ers for the le­gal­i­sa­tion and reg­u­la­tion of medic­i­nal cannabis.

Both were brought up with strong Chris­tian val­ues. “We were taught to be­lieve that the use of mar­i­juana was a scourge on so­ci­ety,” says Rhonda. “We still do not sup­port recre­ational use of mar­i­juana in any way, shape or form. If you have a healthy brain, why would you take any­thing that would al­ter your men­tal state? But medic­i­nal use to pro­vide re­lief to the sick and dy­ing is a dif­fer­ent is­sue.”

Given their back­grounds, they were scep­ti­cal about med­i­cal cannabis at first. “Greg takes a very sci­en­tific ap­proach to ev­ery­thing in life,” Rhonda says. But the more they re­searched, the more they be­came con­vinced that medic­i­nal cannabis oil might help some chil­dren, such as Lachie, with treat­ment-re­sis­tant epilepsy. Like can­cer, epilepsy is not one dis­ease. It has many causes and dif­fer­ing lev­els of sever­ity. In Lachie’s case, the sever­ity is off the scale. It would be fool­hardy to be­lieve med­i­cal cannabis will be a magic bul­let for ev­ery pa­tient. “It may not be a mir­a­cle oil for Lach­lan, but it’s an op­tion, and frankly we need more op­tions,” Rhonda says.

They’ve found sup­port in un­ex­pected places. In one of the 11 public hos­pi­tal emer­gency de­part­ments they’ve ended up in with Lachie, they were sur­prised when a doc­tor broached the sub­ject of medic­i­nal cannabis, given the re­luc­tance of many Queens­land med­i­cal spe­cial­ists to dis­cuss the is­sue with pa­tients. As Lachie lay un­con­scious, the emer­gency doc­tor spoke can­didly and com­pas­sion­ately with Greg and Rhonda about whether they had con­sid­ered the pos­si­bil­ity of step­ping out­side tra­di­tional medicine. “He said: ‘Look, there’s well-doc­u­mented ev­i­dence over­seas, par­tic­u­larly in the US, where they’re us­ing medic­i­nal cannabis oil for seizure con­trol’,” Rhonda says. “It was a fairly short con­ver­sa­tion. He ba­si­cally asked us if we’d thought about it for Lachie. We said: ‘No, it’s il­le­gal.’ But it re­in­forced to us that there’s some med­i­cal ben­e­fit in cannabis oil.”

They’ve had sim­i­lar dis­cus­sions with other health pro­fes­sion­als. “We are ap­pre­cia­tive to those peo­ple who have whis­pered to us in hos­pi­tal cor­ri­dors and given us in­for­ma­tion in re­la­tion to med­i­cal cannabis as be­ing an op­tion,” my sis­ter-in-law says. “It’s been hum­bling.”

Med­i­cal cannabis use is per­mit­ted in 23 US states and more than a dozen coun­tries, in­clud­ing Canada, Switzer­land, the Nether­lands and Is­rael. Greg and Rhonda know fam­i­lies who have flown their chil­dren to the US to gain ac­cess to medic­i­nal cannabis oil legally. It’s an op­tion un­avail­able to Lachie, given the sever­ity of his seizures. Even driv­ing him to Bris­bane for med­i­cal ap­point­ments,

There’s well-doc­u­mented ev­i­dence over­seas, par­tic­u­larly in the US , where they’re us­ing med­i­cal cannabis oil for seizure con­trol.

emer­gency doc­tor Cri­sis care … As Qweek­end ar­rives at the Miles res­i­dence in Toowoomba to do a photo shoot for this story, Lachie has a seizure and is taken to hos­pi­tal, un­con­scious; ( open­ing pages) Lachie with par­ents Greg and Rhonda.

or to the Gold and Sun­shine coasts for fam­ily hol­i­days, is nerve-wrack­ing, par­tic­u­larly in heavy traf­fic. He has had seizures on the M1 and the Bruce High­way. Ev­ery­where he goes, thoughts turn to how paramedics would get to him in an emer­gency.

In Fe­bru­ary last year, Lachie was taken to Syd­ney on a com­mer­cial flight, ac­com­pa­nied by a doc­tor and para­medic, for a sec­ond opin­ion on whether the grow­ing cyst in his brain could be caus­ing his seizures. He col­lapsed in his seat ten min­utes into the re­turn flight, trig­ger­ing a mid-air emer­gency. Lachie was dragged into the gal­ley un­con­scious and as ste­wards con­tin­ued pre­par­ing food for other pas­sen­gers, his par­ents, the doc­tor and para­medic worked on him to save his life. “That was a par­tic­u­larly bad one,” Greg re­calls. An am­bu­lance was not per­mit­ted on the tar­mac to meet the plane and, af­ter land­ing, pas­sen­gers were al­lowed to step over Lachie to get to their con­nect­ing flights. “It was just shock­ing,” my brother says, shak­ing his head. “I have lost count of the num­ber of days I thought my son would die,” says Rhonda. “That was an­other one of those days.”

Putting Lachie on an over­seas flight to get him to a coun­try where doc­tors could legally ad­min­is­ter med­i­cal cannabis would risk his life. Giv­ing it to him in Queens­land, where it re­mains il­le­gal, risks a pos­si­ble jail term and child safety of­fi­cers knock­ing on their door.

As the medic­i­nal cannabis de­bate gains mo­men­tum in Australia, Greg and Rhonda have met and spo­ken with par­ents who are al­ready giv­ing it to their chil­dren. Deisha Stevens, 8, of Coffs Har­bour, on the NSW north coast, has been tak­ing cannabis oil since April last year. She cel­e­brated 12 months seizure-free ear­lier this month. Her fa­ther, David, turned to medic­i­nal mar­i­juana as a last re­sort when doc­tors told him there was noth­ing else they could do for Deisha, who was tak­ing seven epilepsy drugs for the ex­tremely rare ge­netic con­di­tion, con­tin­u­ous spike waves dur­ing slow-wave sleep syn­drome. “I wasn’t happy to sit back and watch my child regress and die,” he says. “You do what you need to do. Be­fore the switch to medic­i­nal cannabis, Deisha couldn’t read, couldn’t write, she only had a few words to say. She was ba­si­cally a baby in­side a child’s body. Now, she’s a bright, bub­bly girl who lights up a room. In Septem­ber last year, she sat down and wrote me a Fa­ther’s Day card.”

Stevens is con­cerned that pub­lic­ity sur­round­ing suc­cess sto­ries, such as Deisha’s, has cre­ated a new black mar­ket for medic­i­nal cannabis oil in Australia, with des­per­ate par­ents pay­ing thou­sands of dol­lars for a dodgy prod­uct. “More and more fam­i­lies are look­ing at try­ing it,” he says. “They’re buy­ing stuff and they don’t know what they’re buy­ing. There are peo­ple out there sell­ing snake oil. I know of fam­i­lies, both in NSW and Queens­land, who have spent ridicu­lous amounts of money, be­tween $3000

WE HAVE TRIED TO IN­STIL IN [LACHIE’S BROTH­ERS] THAT, NO MAT­TER WHAT’S THROWN AT US, WE KEEP GO­ING.

rhonda MILES

and $6000, for a prod­uct that tastes like petrol and sends their kids bounc­ing off the walls.” His con­cern is shared by Queens­land Chief Health Of­fi­cer Dr Jean­nette Young. “Re­cent anal­y­sis in Vic­to­ria of prod­ucts sold as cannabis oil pur­chased over the in­ter­net by Vic­to­rian fam­i­lies shows that 40 per cent of the prod­ucts did not con­tain any cannabis,” she says. “It is very im­por­tant to en­sure that any medic­i­nal cannabis prod­ucts made avail­able to the public are safe, ef­fi­ca­cious and ap­pro­pri­ately reg­is­tered as medicines.”

In NSW, de­spite go­ing public with their story, Stevens is pro­tected un­der guide­lines is­sued by LNP Pre­mier Mike Baird giv­ing po­lice dis­cre­tionary pow­ers to decline to charge pa­tients with a le­git­i­mate use for medic­i­nal cannabis. “I’m con­fi­dent we’ll never have a knock at the door,” he says. “Ba­si­cally, we’ve got a full amnesty.”

Af­ter meet­ing the Stevens fam­ily in Jan­uary, Greg and Rhonda con­tem­plated be­com­ing “health refugees” and mov­ing to NSW to give them pro­tected ac­cess to medic­i­nal cannabis for Lachie. For the time be­ing, they have cho­sen to re­main in Queens­land to al­low Con­nor to fin­ish high school, for Greg to con­tinue work­ing and for Lachie to be close to Toowoomba Hos­pi­tal and the “amaz­ing” paramedics and doc­tors they credit with sav­ing his life over and over again. “Hands down, it’s the best hos­pi­tal we’ve been in,” Rhonda says. “There’s an at­ti­tude, a cul­ture, that’s won­der­ful.” PO­LIT­I­CAL SUP­PORT FOR MEDIC­I­NAL CANNABIS law re­form is grow­ing. Toowoomba-based LNP Se­na­tor Barry O’Sul­li­van, a for­mer drug squad de­tec­tive, has backed moves to al­low medic­i­nal cannabis use in cases such as Lachie’s. O’Sul­li­van is on the Se­nate’s Legal and Con­sti­tu­tional Af­fairs Leg­is­la­tion Com­mit­tee, which has been in­quir­ing into a pri­vate mem­ber’s bill drafted by the new leader of the Greens, Se­na­tor Richard Di Natale, de­signed to le­galise med­i­cal mar­i­juana. If passed, the bill would cre­ate an in­de­pen­dent body of ex­perts, the Of­fice of Medic­i­nal Cannabis, which would over­see the grow­ing, pre­scrip­tion and dis­tri­bu­tion of med­i­cal mar­i­juana prod­ucts.

O’Sul­li­van says he’s been moved by the tes­ti­monies of peo­ple such as Rhonda, and also Paul Neville, for­mer fed­eral LNP mem­ber for the Bund­aberg-based seat of Hin­kler, whose 10-yearold grand-daugh­ter Ava has been tak­ing medic­i­nal cannabis oil to con­trol seizures re­lated to tuber­ous scle­ro­sis. “When I see a con­ser­va­tive warhorse such as Paul Neville, a man I re­spect greatly and who has men­tored me po­lit­i­cally over 35 years, give ev­i­dence about the pos­i­tive im­pacts of a cannabis de­riv­a­tive, that was the cross­over line for me,” O’Sul­li­van says. “There’s no doubt that in the ar­eas of epilepsy, chronic pain, nau­sea from chemo­ther­apy treat­ment, and con­di­tions as­so­ci­ated with AIDS and HIV, the anec­do­tal ev­i­dence about the benefits of cannabis is vo­lu­mi­nous and com­pelling.”

O’Sul­li­van, who re­mains stead­fastly against de­crim­i­nal­is­ing mar­i­juana for recre­ational use, says the push to­wards a fed­eral frame­work to al­low medic­i­nal cannabis use needs to be ad­vanced cau­tiously and sci­en­tif­i­cally. “There’s re­search and devel­op­ment that has to hap­pen,” he says. “You’ve got to iden­tify the con­di­tions the drug can be used for af­ter hu­man tri­als. In the mean­time, we should do what­ever it takes to pro­tect peo­ple with pre-ex­ist­ing con­di­tions, af­ter pri­mary treat­ments have been ex­hausted, who have gen­uinely ac­cessed the prod­uct for a medic­i­nal ap­pli­ca­tion. They need to be in­su­lated from any sort of pros­e­cu­tion. I’m mo­ti­vated to try to get mums and dads out of harm’s way as they do what we all do – look af­ter their loved ones.”

The sig­nif­i­cance of O’Sul­li­van’s stance can­not be over­stated. It’s “very rare”, he says, for a “burnt-out, tired, old Na­tional Party se­na­tor” to agree with the Greens on any­thing – in­clud­ing the weather. “We are so ide­o­log­i­cally op­posed on ev­ery is­sue,” the for­mer LNP power­bro­ker says. “But here’s one oc­ca­sion where I must salute Se­na­tor Di Natale. It’s a brave bill. It’s a timely bill.”

Psy­chi­a­trists, such as Tas­ma­nia’s Dr Eric Rat­cliff, are ner­vous about le­gal­is­ing med­i­cal mar­i­juana, given the link be­tween regular recre­ational use and psy­chosis. Stud­ies of young adults have sug­gested cannabis use can pre­cip­i­tate psy­chotic symptoms and dis­or­ders, par­tic­u­larly in peo­ple with a fam­ily his­tory or a ge­netic pre­dis­po­si­tion. “Schizophre­nia ap­peared to be get­ting less fre­quent 30 years ago, but it’s be­com­ing much more fre­quent now,” Rat­cliff says. “The ac­cu­mu­lat­ing ev­i­dence is that it’s use of cannabis in the early to mid­dle teens that pro­duces the high­est risk. Any­thing that in­creases the risk is po­ten­tially quite se­ri­ous. When there’s con­sid­er­a­tion of the use of the drug in chil­dren with epilepsy the risk could be quite high.”

Greg and Rhonda counter that ar­gu­ment with their per­sonal ex­pe­ri­ence of epilepsy med­i­ca­tions. They say some of the anti-con­vul­sants Lachie’s been pre­scribed have also caused psy­chosis, and the long-term ef­fects of those drugs on the de­vel­op­ing brain are un­known. The boy nick­named “Mr Please and Thank You” by his ma­ter­nal grand­mother, Bonita Cat­tell, has been ad­mit­ted to men­tal health units three times. He’s had to be pre­vented from jump­ing off bal­conies and out of mov­ing cars. His broth­ers have had to sit on him to stop him from in­jur­ing him­self. Dur­ing one hos­pi­tal ad­mis­sion he was strapped to his bed, nurses have called se­cu­rity of­fi­cers to his room, and at times he’s needed se­da­tion. The first an­ti­con­vul­sant he was pre­scribed four years ago, Kep­pra, has only re­cently been the sub­ject of a warn­ing by the US Food and Drug Ad­min­is­tra­tion that pa­tients should be watched for be­havioural ab­nor­mal­i­ties and psy­chotic symptoms. Other side-ef­fects of epilepsy drugs can in­clude os­teo­poro­sis, dizzi­ness, drowsi­ness, vom­it­ing and swollen gums.

Ad­dic­tion pol­icy ex­pert Pro­fes­sor Wayne Hall, direc­tor of the Uni­ver­sity of Queens­land’s Cen­tre for Youth Sub­stance Abuse Re­search, says the ef­fec­tive­ness of medic­i­nal cannabis in epilepsy is well-de­serv­ing of re­search. But he says sug­ges­tions of gov­ern­ments be­com­ing in­volved in grow­ing mar­i­juana and sup­ply­ing the drug be­fore the re­sults of tri­als are known need to be thought through. “Once gov­ern­ments start pro­vid­ing some­thing, it’ll be harder to find out whether it works or not,” he says. “Peo­ple won’t want to par­tic­i­pate in tri­als; they’ll just want to get the drug. If we de­cide fur­ther down the track that it isn’t very ef­fec­tive for a par­tic­u­lar pur­pose, it would be very dif­fi­cult to stop giv­ing it out.

“In the mean­time, I don’t have a prob­lem with state gov­ern­ments de­cid­ing to ex­empt from crim­i­nal pros­e­cu­tion peo­ple who might use cannabis for de­fined med­i­cal pur­poses. The un­cer­tain­ties about the po­ten­tial ad­verse ef­fects of sus­tained use of cannabis for med­i­cal use would need to be clearly com­mu­ni­cated.”

Med­i­cal prac­ti­tioner Dr Jeanne-Marie van der Westhuizen, who is study­ing for her mas­ter’s in ad­dic­tion medicine, says the de­bate is com­pli­cated by the dif­fer­ent species of cannabis avail­able, the dozens of com­pounds within the plant that pro­duce dif­fer­ent ef­fects, and the va­ri­ety of ways the drug can be ad­min­is­tered. Recre­ational users seek plants with higher lev­els of the psy­choac­tive in­gre­di­ent, tetrahy­dro­cannabi­nol (THC), which pro­duces the “high” they get when they smoke the drug. But the sub­stance be­lieved to con­tain anti-seizure prop­er­ties, cannabid­iol (CBD), does not in­volve get­ting “stoned” and is usu­ally given orally, as an oil-based prod­uct.

“Dif­fer­ent forms of cannabis have been proven to be med­i­cally use­ful in seizure dis­or­ders, anti-in­flam­ma­tory bowel dis­or­ders and for chronic pain,” van der Westhuizen says. Be­cause cannabis is sched­uled as an il­le­gal drug, she says re­search has been sti­fled. “Cannabis has been painted as this ter­ri­ble evil – so evil that we can­not pos­si­bly even re­search it, which has only done us harm,” van der Westhuizen says. “It’s de­nied peo­ple what is po­ten­tially a re­ally use­ful med­i­ca­tion.” She says strains of cannabis that are high in THC can harm the ado­les­cent brain with heavy recre­ational use. “But we also know that some con­di­tions, like Lachie’s, that in­volve repet­i­tive, un­con­trolled seizures also dam­age the brain, and that med­i­cal science, at this time, is un­able to help him. My opin­ion that chil­dren, such as Lachie, should be al­lowed to try cannabis is also a stance adopted re­cently by the Amer­i­can Academy of Pe­di­atrics.”

Rhonda has tire­lessly taken Lachie’s case to politi­cians on both sides of the divide, fed­eral and state, talk­ing to any­one who will lis­ten. Ear­lier this year, she wrote to Queens­land Pre­mier An­nasta­cia Palaszczuk. Out of the blue, while she, Greg and Lachie were en­joy­ing a fam­ily hol­i­day in Caloun­dra, on the Sun­shine Coast, Palaszczuk phoned. Be­fore fly­ing to the Coun­cil of Aus­tralian Gov­ern­ments meet­ing in Can­berra, where medic­i­nal cannabis was to be dis­cussed, the Pre­mier sought a brief­ing from some­one at the heart of the de­bate – Rhonda. Three days later, she an­nounced that Queens­land would join NSW and Vic­to­ria in Australia’s first medic­i­nal cannabis tri­als. “Talk­ing to Rhonda con­firmed for me the need to ex­plore this op­tion fur­ther, if it meant even the chance of pre­vent­ing chil­dren like Lach­lan from experiencing any more pain and dis­tress,” Palaszczuk says. “I hope [Rhonda] now knows she’s not alone. My gov­ern­ment is lis­ten­ing and my gov­ern­ment is act­ing.”

De­tails of the tri­als still need to be worked out and the pos­si­bil­ity of an amnesty ad­dressed. But Lachie’s story has moved a Pre­mier. He has no idea he’s be­come the face of the medic­i­nal cannabis de­bate in Queens­land. All this 15-year-old wants is for his seizures to end and to play soc­cer again for Toowoomba’s Wil­low­burn Foot­ball Club. Trace Lachie’s jour­ney at face­book.com/Lach­lanMilesSup­port­ers To do­nate to CareF­light: caref­light.org.au

I RE­ALLY THOUGHT HE WAS GO­ING TO DIE THAT DAY … [THAT] MY CHILD MIGHT WELL DIE NEXT TO HIS GREAT­GRAND­MOTHER’S COF­FIN.

rhonda MILES Strength and sup­port …( left) Lachie Miles was par­tic­u­larly close to his late great-grand­mother, Rita Do­ran ( pic­tured to­gether in early 2014); ( op­po­site page) with el­der broth­ers Con­nor ( at left) and Alexander.

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