Cannabis has provided an immeasurable amount of relief and comfort to countless numbers of people. For Maddie Holt, it has given her time.
Maddie was born in November 2012 with Zellweger Syndrome, a terminal genetic disease that destroys the white matter of the brain and effects the production of long chain fatty acids. The rare disorder affects 1 in 50,000 live births, reports the National Organization for Rare Disorders (NORD).
“Most children with this devastating disease do not survive past their first year of life,” explained Maddie’s mother, Meagan Holt. The syndrome can often affect most organs in the body, according to NORD. Now four, the disease has left Maddie deaf, blind, and completely dependent on a feeding tube. Her other symptoms include: osteoporosis, kidney stones, liver dysfunction, coagulopathy, anemia, low muscle tone, adrenal insufficiency, and in January of 2015, she developed seizures.
In 2015 when Maddie was two, the Holt’s turned to cannabis, desperate to provide their daughter some peace. As a result, they also found hope.
“When we began using cannabis, she was maxed out at 26 pharmaceuticals and her medical team was out of options,” said Holt. Daily seizures caused Maddie to stop breathing, and at just two years old, she was put on hospice with the expectation her life would end soon. “Cannabis was our last bit of hope, and all we hoped for at that point was for her to be at peace,” said Holt.
The treatment proved significant. “Cannabis allowed my daughter to have seizure free days,” said Holt, “It helped her to breathe through the seizures she does have.” In addition, the treatment has decreased the number of pharmaceuticals needed from 26 to only four, a reduction of 22 medications. It also got her off hospice, and has given her a quality of life they never thought possible.
Maddie’s treatment consists of a combination of cannabis products, Holt explained. “She uses a high CBD full-extract cannabis oil. We give her four doses per day, so she essentially receives 90 mg CBD and 45mg THC-A every single day.”
For the times when her symptoms flare up, or the number of her seizures increase, Maddie is given a “stress dose,” which includes an extra dose of a 1:1 tincture containing 3 mg of CBD and 3 mg THC-A. The Holts also use medicated topicals, such as Kush Creams, for congestion and skin sensitivity, and Cannabis Basics Naked lip butter for her lips.
To rescue Maddie from her seizures, said Holt, she is given a THC-A isolate. “This is very new for Maddie, […] but over the last 35 days, she has had six seizures and THC-A has stopped ALL of them.”
As far as strains, Holt said that Cannatonic, ACDC, Sour Tsunami, and Harlequin have worked well for Maddie.
“To see my child making improvements, re-learning sign language, kicking her feet, playing with toys and laughing… Cannabis not only brought Maddie back to life, but it restored my passion. It encouraged me to embrace the voice inside of me, and to stand up for what I believed in. It gave me purpose again.”
Now, Holt is on a mission to spread hope through advocacy and education. In 2016, she combined forces with Michael Scott and Ellen Muench, founders of the nonprofit organization, Project Positive Change, which focuses on positive outreach.
Through six facets, Project PC educates and inspires people on a local, national and international level. “We all had a mission to change the world in a positive way, [and to] to show others that we must be the change we wish to see in this world,” Holt said.
“Currently we are a small organization of just three, but it is our hope that as we continue down this path that we will meet others who have a passion for positive change.” Eventually, Project PC hopes to go global and “optimize the wave of change we so desperately seek,” Holt added.
As a founding member and Director of Project PC, Holt helps patients and caregivers take control of their healthcare, and “re-educate the medical community on non-invasive treatment options as first choices instead of last resorts.”
She shares Maddie’s journey by speaking at events, and teaching classes. Holt also finished her first book, “One Mom’s Advice; How to Advocate for your Medically Complex Child.”
Holt is also a human rights advocate. She and Maddie regularly travel to Olympia, Washington to lobby 10-12 hours per week for Maddie’s Law.
“Maddie’s Law was created when I saw a flaw in the current laws in Washington. Currently, schools may have a policy regarding medical cannabis use at school, however, no school has such policy,” added Holt.
So, she took action. “I drafted legislation, met with my local senator, and discovered another parent had contacted his representative and HB1060 & SB5290 were born,” Holt said. “I have begun to realize in our meeting with lawmakers that Maddie changes people’s lives, just like cannabis changed hers.”
In terms of future goals, Holt hopes she will continue to have the opportunity to tell her story, and advocate through Project PC.
“We must stand up. We must push past the barrier of the possible and remember to never give up hope. Life is about living, loving, and giving,” Holt said.
For more information about Project Positive Change, or to donate, visit ProjectPC.org
Victoria Andrea Leon says
Hi my son has Zellweger Syndrome as well and I would love to try cannabis for him on his last days please can someone please help me find a doctor who can prescribed cannabis to my son. Have gone to some dispensers but they tell me they can’t help me because he is 9 months old and need a doctor to fill out a prescription but no one has a license to do that for my son. Please it’s my last opportunity for him I won’t give up.
Melissa Hutsell says
Hi Victoria, thank you for reaching out! We always recommend looking into cannabis doctors in your state/area (there are even online resources that may provide guidance), or groups like CannaKids. We’re wishing you and your little one all the best and hope this is helpful!