I received the following message from the New Approach Missouri medical cannabis campaign:
Hello, my name is Candace. I am writing today to urge you on behalf of my son Harper to support New Approach Missouri’s medical cannabis initiative.
Harper was born with Ohtahara Syndrome. This is a very rare form of epilepsy, which is severe, progressive and causes developmental delays. Because of this, my son cannot walk, cannot eat by mouth, and cannot speak. I have to be his voice. I am his advocate.
Ohtahara Syndrome is marked by a burst suppression EEG pattern. Burst suppression occurs when brain activity flat lines followed by high spikes of brain activity. Children with this diagnosis rarely live past six months to one year old. My son just celebrated his seventh birthday. He is my miracle.
Harper currently suffers numerous tonic-clonic and myoclonic seizures. Sometimes the seizures happen individually. Sometimes his seizures happen in a cluster form and can last as long as 15 minutes. Oftentimes, Harper turns blue as a result of these seizures. I have administered CPR on my son more times than I can count — sometimes multiple times in one day. Harper currently takes three anti-seizure medications and multiple other medications due to his delays, some to offset the side effects from his seizure medications.
Harper cannot walk and is wheelchair bound. He suffers from osteopenia due to the inability to walk and move his extremities at will. I have to move his hands and feet for him.
Seizures have taken such a toll on Harper and his bodily functions that he has lost the ability to swallow. Harper is fed via a feeding pump where his food is pumped into his stomach. Recently, his seizures have become so violent that he chokes and turns blue and throws up his food. That forced us to insert his feeding tube into the jejunum, bypassing his stomach, so he will not choke on the nutrition his body needs to grow.
Harper’s immune system is easily compromised because his lungs are weakened by his seizures. He has recently been diagnosed with respiratory insufficiency. Seizures have started to cause deterioration of his brainstem as well. Harper cannot physically breathe deeply because of his weakened lungs. Additionally, Harper’s body retains CO2, so his body is very slowly poisoning itself. Harper wears a bipap mask at night and during his naps to help keep CO2 at the correct level in his body.
Harper has a nurse with him at all times at school due to his choking risk and seizure activity. He also has a nurse in the evenings when he is at home. All other times I am with him, or his father cares for him. Harper requires 24 hour care and assistance.
Despite all of these special needs and challenges, Harper is a very happy boy. He is always smiling. He loves going to school. He loves all of his classmates, teachers, family, and friends. His dogs are his best friends. Harper loves to be outside, and he loves animals. His favorite activities are listening to music or reading books. Harper communicates with me and others who are close to him with facial expressions, eyebrow raises, and verbal noises. He understands and follows directions and shows exceptional social behaviors appropriate for his age. He loves to be around people.
Harper deserves to keep doing all of the activities that he loves, and he deserves to be happy, healthy, and live his life with the people he loves.
I have watched my son struggle for so many years. A few years ago, I began to hear all of the miraculous stories of children and patients who useHarper and his family at the Royals’ game medical marijuana in legal states. Some of the children with the same diagnosis as Harper are walking, talking, and eating by mouth while only on medical cannabis, no pharmaceuticals. It is incredible.
I searched for someone or something that will help me get this medication to potentially save my child, or at least offer him some relief from all that he suffers daily. I found New Approach Missouri, and because of this organization I have hope.
So many people view this type of medical therapy as irresponsible or a chance to “get high.” These allegations are false. The stories of patients using cannabis and experiencing life-saving results are very real and overwhelming. Everyone who needs this medication deserves to have legal access.
Harper deserves the chance to try this medication. My son deserves to have the best quality of life possible. All patients with debilitating diseases deserve access to this medication.
They need you. I need you. Harper needs you.