“Hemp helped my sister be my sister“
The Southwest Cannabis Conference and Expo (SWCCExpo) is a professional and educational medical cannabis and hemp conference where industry members, entrepreneurs, local leaders, companies, advocates, and curious individuals can learn about the industry. People can discuss with other like-minded individuals about the benefits of cannabis. It took place at at the Fort Worth Convention Center this weekend (February 27 & 28, 2016).
Speakers included Jim McMahon, keynote Montel Williams, and 8-year-old Lily who spoke for the first time about how hemp impacted her life. Below is Lily’s introduction to our speech followed by my written portion. A link to view the entire speech is at the end of this post.
Everyone has a success story.
Many of us standing before you today speak of how hemp changed our lives and the lives of our loved ones.
I’m no different.
At just two weeks of age, seizures began overtaking my daughter Harper’s body. We searched nationwide for a doctor who could determine what was happening.
After nine months one delivered the diagnosis: CDKL5.
At the time in 2011, this rare and often deadly condition affected 300 worldwide. Today, the number has more than doubled. Most with CDKL5 are confined to wheelchairs, cannot walk, talk or care for themselves; they suffer from scoliosis, visual impairment, sensory issues, and various gastrointestinal issues.
The worst part was hearing the words “life-threatening” and “no known cure” ring in our ears.
I can sum up what my husband and I thought about that: Unacceptable.
From that point on we knew what we were dealing with and we decided to honor Harper by learning as much as we could about CDKL5. The goal was giving her the best quality of life possible.
Our hearts went out to the other families battling this same condition so we launched Hope4Harper.com in an effort to share what we were learning with others around the world.
During the first three years of Harper’s life, I would cry and pray for God to take her to end her suffering. When that didn’t happen, I realized that Harper had a mission and it became my mission to help her fulfill hers.
In the fall of 2013, we watched a documentary on cannabis use for seizure control. In Texas, you can have all the guns in the world but marijuana? It’s not allowed.
In addition, we simply could not leave five generations of family, who are our support system, nor could we leave the incredible team we had built of supportive doctors, to move to a legalized medical marijuana state.
After extensive research we found an alternative: RSHO from HempMeds.
Each person metabolizes differently, so it took us six months to find the combination of CBD oil that worked best to control Harper’s seizures. She consumed both blue and gold label hemp oil through her G-tube each day.
Immediately upon consumption of RSHO Harper’s seizures were cut in half. Then we watched and waited…and waited…and waited.
The seizures stopped in March 2014.
Harper went from 40 plus seizures per day to NONE after 6 months of using RSHO.
This is when Harper stopped merely existing, and began living.
Her increased interaction strengthened the bond between her siblings, us – her parents, and loved ones. She was removed from the Failure to Thrive List.
We were allowed to finally know our daughter’s fun, loving, yet sassy personality.
Harper could nod yes or no.
She had a visual communication device and told us what she liked and didn’t like.
With assistance, she could ride a bike, a horse, and she could swim.
She wanted to be with other girls her age, dress up and have fun!
Harper redefined what it is like to have a “normal” childhood.
She was crowned Texas’ 2015 National American Miss Princess Cover Girl.
In my story, do you see that what is undeniable?
HEMP HELPS!
I encourage all of us to help others and lead by example.
Whether it is telling our unique stories to help educate one person, one country or the world, we need to stop the fighting and start unifying.
Because Hemp Helps!
For those who cannot relocate to a medical marijuana state, please tell them about RSHO. It’s an alternative that’s available in all 50 states. Read about it on Hope4Harper.com. Give them support so they don’t feel isolated and are able to try what is available to them.
It is surreal that today, we stand together at a cannabis conference – IN TEXAS!
Because Hemp Helps!
Cannabis encompasses many strains and, since each person metabolizes differently, one is not be better than another.
To me, it’s like wine. There are a number of varieties and you have to find the one that best suits you.
With cannabis, there are a number of varieties and we need to be encouraging people around the world to find the strain that works the best for them and encouraging them with what’s available to them.
Because Hemp Helps!
If we, as a cannabis culture, cannot unify in respect, HOW can we then petition (not fight) for what we already know:
HEMP HELPS!
We should look to cannabis as a first resort.
If needed, then pharmaceuticals can step in to work WITH nature.
Harper was the perfect balance of nature and science. Hemp – without a doubt – improved and prolonged her quality of life.
But it could not cure genetics.
Sadly, Harper passed away January 8, 2016. Cannabis left us knowing so much about her that we would have never known, had it not been for RSHO.
Her likes, her dislikes; her favorite color, number, animal.
Through Facebook, Harper’s example helped a little girl with CDKL5 in Brazil. That led to the Brazilian government’s historic decision to approve RSHO for import, government subsidies, waiving of import taxes and covering the cost of it under health insurance!
Because Hemp Helps!
Harper left the world with one final gift. She donated the world’s first 28-month daily cannabis use brain to CDKL5 and seizure research. She would want people to know that Hemp Helps!
Everyone has a success story. Here is Harper Howard’s. Thank you.
At the conclusion of our speech, the tribute video from Harper’s Celebration of Life was shared. You can watch it here.
All in all, an exhausting and emotional weekend. It is another memory to add to this already hard yet monumental year.
Next: Love Day and the only Memorial Run4Hope
I am so proud of my Lily Bug. Next we will continue to to set our sights on Love Day and plan the Memorial Run4Hope.
Even if your participation can only be virtual, I encourage you to register as it will be the only memorial run we will do. Packets will be mailed to all virtual runners. You can register for Run4Hope here and keep up with new details by following the Run4Hope Facebook Page.
Watch our entire Southwest Cannabis Conference speech here.
Recent Posts
Harper Howard Celebration of Life – Never Give Up Hope
Unpacking a New Normal
Harper went to Heaven
Month-by-Month: CDKL5 2015 Year in Review (what we now know was Harper’s last…and best…year)