Law change brings hope to sick kids

The Community Connection - - OPINION -

The le­gal­iza­tion of med­i­cal mar­i­juana last year in Pennsylvania ended years of lob­by­ing but also started new de­bates as busi­nesses ap­plied for grow per­mits and dis­pen­sary per­mits.

The dis­pen­sary per­mits de­ter­mine the lo­ca­tions where pa­tients with doc­tor’s pre­scrip­tions can pur­chase the cannabis prod­ucts pre­scribed for the 17 dif­fer­ent ail­ments the law iden­ti­fies as being able to be treated. Among them are epilepsy, cancer, autism, glau­coma, HIV, Parkin­sons, mul­ti­ple scle­ro­sis and post trau­matic stress dis­or­der.

The le­gal­iza­tion of med­i­cal mar­i­juana is spawn­ing a lu­cra­tive, new phar­ma­ceu­ti­cal in­dus­try in Pennsylvania, with pos­i­tive ram­i­fi­ca­tions for com­mu­ni­ties – and con­tro­versy about how and where per­mits have been awarded.

But for some peo­ple, par­tic­u­larly par­ents of chil­dren with epilepsy and seizure dis­or­ders, the law means just one thing: hope for their chil­dren to have a nor­mal life.

At a re­cent World Med­i­cal Cannabis Con­fer­ence in Pitts­burgh, three par­ents with chil­dren with spe­cial needs talked about how giv­ing daily doses of cannabis oils to their chil­dren helped im­prove their qual­ity of life.

“Chil­dren, yes, use cannabis,” said An­drew Hard, CEO of CMW Me­dia, who moderated the hour-long panel. “It’s great for them and it’s great for their health. Yes, that may be a con­tro­ver­sial thing to say, but yes, it also very much is the right thing.”

Just ask Lau­ren March­eskie of Roy­ers­ford, Mont­gomery County.

March­eskie has gone through a par­ent’s worst night­mare of watch­ing her young child suf­fer, as her in­fant daugh­ter Aria en­dured seizures.

March­eskie told her story to Dig­i­tal First Me­dia re­porter Evan Brandt, re­count­ing the emo­tional roller coaster of try­ing to find help for her baby.

The seizures be­gan when Aria was just six weeks old. The seizures — “her head turns left and her body stiff­ens” — only lasted five sec­onds at first, “but I knew it wasn’t right,” said March­eskie.

Even­tu­ally, Aria was di­ag­nosed with fo­cal cor­ti­cal dys­pla­sia, a dis­or­der from birth that causes seizures which can­not be con­trolled by med­i­ca­tion.

Know­ing what it was didn’t make things any bet­ter. In fact, things got worse from there. Aria was hav­ing 60 to 80 seizures a day, each last­ing as long as two min­utes, and she was being treated by a smor­gas­bord of phar­ma­ceu­ti­cals.

What fol­lowed were see­saw months of try­ing dif­fer­ent drugs, hav­ing them work for a time, a brief pe­riod of hope, then the re­turn of the seizures.

In 2015, Aria had brain surgery to re­move part of her right tem­po­ral lobe and small part of the pari­etal lobe and oc­cip­i­tal lobe in an at­tempt to stop the seizures. As a re­sult, her vi­sion is im­paired.

After­ward, Aria was seizure­free for 45 days, and then they started up again. Aria had a sec­ond brain surgery that Sep­tem­ber but the seizures con­tin­ued so her par­ents started look­ing for other op­tions in­stead of even more phar­ma­ceu­ti­cals.

“She was al­ready on three med­i­ca­tions and it hin­dered her development, we were work­ing with her on an­i­mal sounds and she wasn’t get­ting it. She was like a zom­bie,” March­eskie re­calls.

“We thought, we can’t keep putting her through this. There has to be a bet­ter way.”

She found a bet­ter way on the Web — Haleigh’s Hope, named after Haleigh Cox who was suf­fer­ing from hun­dreds of seizures a day. Be­cause the med­i­ca­tion is clas­si­fied as hemp oil, March­eskie was able to get it shipped across state lines to Pennsylvania.

By last April — four months of tak­ing a few drops ev­ery day of the oil mixed with the ex­tract of that par­tic­u­lar strain of med­i­cal mar­i­juana — Aria was seizure-free dur­ing the day and only seiz­ing in her sleep.

The in­tro­duc­tion of a form of med­i­cal mar­i­juana into Aria’s treat­ment was a life changer for March­eskie and her daugh­ter. Like the name of the medicine, they have hope for the fu­ture.

Their story is one of many told by par­ents in seek­ing ac­cess to cannabis drugs that will help their chil­dren.

As with many is­sues in this con­ser­va­tive Com­mon­wealth, it took a while to achieve the le­gal­iza­tion of med­i­cal mar­i­juana.

For chil­dren like Aria, that wait will soon bring pos­i­tive re­sults.

And hope.

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