Editor’s Note: Our annual Thanksgiving Day “Thankful for ...” feature.
MOUNT CARMEL — On Monday night, 10-year-old Marksen Belkadi was sitting quietly in the living room with his grandmother watching “The Voice.”
For most families, it’s a common scene. For the Belkadis, it’s remarkable.
Marksen has severe autism, making him incapable of communicating and prone to violent fits during which he injures his parents, Maria and Massi, and sometimes himself.
Doctors in the Geisinger emergency room knew the family by name because of frequent visits. In his inability to express himself, Marksen’s fits were so frequent and extreme they traveled to other hospitals, including Children’s Hospital of Philadelphia and Hershey Medical Center.
“We’ve been through hell,” said his father.
“My husband couldn’t work for a long time,” Maria added. “(Marksen) would scream and we couldn’t find peace with really anything we were doing with him. It was as heartbreaking as it can be for parents to see their kid suffering the way Marksen was.”
But there was hope: medical marijuana. And it has been effective for this Mount Carmel family — testament found in Marksen’s calm viewing of “The Voice” Monday night.
Ebbs and flows
Though Massi was opposed at first, his wife’s research convinced him to help her advocate for marijuana’s legalization for medicinal purposes in Pennsylvania, which happened in 2016. Maria poured her heart out in letters to anyone who would listen.
Only a handful of people were fighting to add autism as one of the ailments considered a “serious medical condition” by the state. “Campaign for Compassion” told the Belkadis they were fighting for its legalization, and that they would fight to have autism added to the list of approved conditions.
As the process dragged on in Pennsylvania, the Belkadis considered options.
“We got to the point where we were looking to move to Colorado because it’s legal there,” Massi said.
But hope first came in the form of state Rep. Russ Diamond (R-102), who advocated on the House floor to add autism to the list of approved conditions for medical marijuana.
As the legislation advanced, the Belkadis would drive to Harrisburg and sit in the Rotunda to watch events unfurl, hoping for a positive outcome.
Maria was at home, watching on TV, and her husband was on the road for work, following along on the internet, when the April 13, 2016 vote for legalization took place.
“It was like watching a football game,” Maria said about a back-and-forth of excitement and disappointment as yes and no votes were tallied.
They said their excitement and relief when it passed is impossible to measure. Maria recalls hugging Marksen and cheering, although he didn’t understand why.
On April 17 of this year, when Gov. Tom Wolf signed the bill into law, the family was in Harrisburg and had the opportunity to thank Wolf personally.
More good news
With medical marijuana legalized, the good news kept coming for the Belkadi family: a clause provided an exception for special needs children to obtain medical marijuana immediately from out of state while waiting for the program to roll out in Pennsylvania.
The Belkadis received their first strain of oil by mail from Georgia, and they said the product was “very good.” But at $150 for a small bottle, it was very expensive.
The price was worth it, though, as they noticed a difference in their son right away. Maria said she mapped the change on a week-to-week basis. Prior to medical marijuana, five out of seven days for Marksen were “a nightmare,” in which he was screaming, fighting, biting and hurting his parents. During the first week on the oil, the frequencies reduced to four days of bad, “and it slowly got better,” Maria said.
Trips to the emergency room were less frequent right away, and, two years later, visits due to aggression have become rare.
Massi believes factors other than the marijuana oil have contributed to lesser aggression. Marksen had been given MiraLAX every day for years, and Massi was suspicious as to whether that was safe.
Doctors assured the Belkadis it was fine, but a study conducted by the Children’s Hospital of Philadelphia showed a side effect children may experience is increased aggression. Massi said removing MiraLAX from Marksen’s daily medications, in addition to the marijuana oil, has helped his son a great deal.
From aggression to affection
Marksen is a different person. He’s more affectionate, he watches movies and his communication has improved. Maria said he now grabs their hands to lead them to something he wants them to see; and he was previously non-verbal, but now occasionally says “yeah” and “mama.”
This past summer, the family was able to enjoy something they couldn’t previously: a full day at Knoebels Amusement Resort, where Marksen enjoyed the rides.
“It’s not the miracle we expected it to be, but it’s made a huge, huge, huge difference,” Maria said.
Massi said small things are big achievements, and they are grateful for the progress. Medical marijuana is a revolution, he said, and is changing lives for the better.
Fighting for others
Their journey has connected the Belkadis to families whose children are suffering but are unable to afford medical marijuana due to it not being legal at a federal level. There are children who are suffering who would benefit from the drug, Maria said, so the fight isn’t over for them until all parents have access.
Maria said, “We are grateful to be in Pennsylvania, that’s for sure.”
The Belkadis are also thankful to Marksen’s school, New Story, in Berwick, and for all the people who have helped them along the way, “from the ‘Campaign for Compassion’ moms to the EMS, to the local police department and our whole community for supporting us in our hardest times with Marksen.”
The family is still in the experimental process, learning which strains work best for Marksen. Massi said there’s still a long way to go, especially because his son is growing so quickly. They will keep adjusting and doing what they believe is best.
Only parents of autistic children can understand what their family has been through, they said. Maria said she won’t accept any criticism from those opposed to medical marijuana.
“We can go straight-faced to anybody and say there is not one ounce of regret in giving my kid that medicine, no matter how taboo you may look at me for giving it to him,” she said. “Never will we regret for one second putting a drop of oil in that kid’s mouth.”