The Real Superman Part XXI

Dylan RunningSnapchat-1746799917897567028The Real Superman Part XXBI

By Jeff King

It has been about a month since I last wrote on the blog. I have been busy working and also with college. I have also been looking into getting CBD oil legalized here in Maryland. One of my older son’s Nicholas most recently introduced me to a young man who is an advocate for NORML in Maryland. His name is Chris Hartsell and he has asked Terri and I to go down to Annapolis Maryland to sit in on a legislation session concerning the legalization of medical marijuana, but more importantly the CBD oil that we are so desperately trying to get for Dylan. I informed him that I would definitely be interested in this, and that I would like to bring Dylan as well and perhaps share our story with the Governor, and the legislative committee concerning this matter. We definitely have a story to tell and we want these lawmakers to hear it.

Although we are not currently member of NORML and after having hearing some of the chapters leaders testify on video in Annapolis, I actually see why many of them are not taken seriously; however, I intend to change that. If I am asked to testify, I believe I bring a personal and heart-felt story to the message of why this plant should be legalized, and made available to patients that are suffering from different ailments. As I have mentioned before, I do not use marijuana, nor do I even drink alcohol. I am not condemning anyone for what they may do though.

I have personally witnessed a few people who were dying of cancer, and even one person, who was very near to me die of AIDS. These people were in constant pain and I watched as these diseases ate away at their bodies and left them former shells of themselves. The friend who died of AIDS couldn’t eat, or do anything, because he was in such miserable pain. He began to smoke marijuana for the last six months of his life. Through this plant, he was able to get back some normalcy to his life. He could cope better with the pain, he also could eat, because it helped him with the nausea that he would get from his AIDS meds. Ultimately, he still died, but at least he lived his last days with some sort of peace.

I have researched many children and adults who have suffered from epilepsy and other ailments. The medicines that are prescribed to them is nothing more than legal poisons that have vicious and debilitating side effects. For example Dylan has to take two different medications to try to control his seizures, yet even these two medicines combined together working in concert with his VNS still doesn’t keep these vampires at bay. I call them vampires, because these seizures, and the medications used to combat them have robbed Dylan of his quality of life. The side effects for Keppra in children include sleepiness, accidental injury, hostility, nervousness, and weakness and even suicidal thoughts! Wow so my 12 year old son may or may not have thoughts of injuring, or killing himself? That is frightening! The side effects of Vimpat which by the way shouldn’t even be prescribed to any patient under 17 years of age, but because Dylan has intractable epilepsy, where no medication seems to work, he was prescribed this medication. The side effects include dizziness, spinning sensation, drowsiness, blurred/double vision, nausea, vomiting, tiredness, loss of balance or coordination, difficulty walking, shakiness (tremor), headache, or memory problems.  I must say, he has lost a lot of his cognitive abilities, and there are days that he cannot walk at all. We witness the tremors, so this is a great medication for people! Now I get to CBD oil, AKA, Charlotte’s Web. I have researched hundreds of cases of children and adults who suffered from uncontrollable seizures, such as Dylan has. This oil has worked miracles in all the cases I have read about. I have talked to some of the parents via email and most of them said, that they’re not even sure that their child would be alive today if it wasn’t for this oil. “CBD oil or Realm Oil) for intractable seizures in children with Dravet Syndrome. These children can suffer 40 or more seizures per day; the seizures are often prolonged in length. The oil is made a from a special strain of marijuana called “Charlotte’s Web” that has extremely low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana that leads to the “high”. However, the strain has elevated levels of cannabidiol, or CBD, a non-psychoactive component that has been shown to have a number of therapeutic benefits, including those that limit seizure activity. The oil is taken in an oral liquid form, not smoked like traditional marijuana. News media has showcased several families from states that do not allow the CBD oil. These families have moved to Colorado from their home states to access the oil legally for their children who suffer from the debilitating seizures”. (http://www.drugs.com/illicit/cannabis.html). I find it hard to believe that the Governor of Maryland, who by the way I voted for, who also has cancer hasn’t considered introducing this bill into legislation. Just today, I was sent an email from my friend Chris Hartsell informing me that the Anne Arundel County Executive that I also voted for has said that he would be against any legalization of medical marijuana, or any of it derivative’s. This fool doesn’t even realize how this could help Dylan and children like him. Hell this could help thousands of ill children as well as adults. These politicians would rather get behind big pharmacy and liquor than consider really helping their contingents that he promised to help for their vote. His banner reads, “People Before Politics” What a crock of BS. Steve! I say put your money where your mouth is and do the right thing for the people of the community. By being against this you are aligning yourself with the corporate clowns, who want to continue to push their poison on the people regardless of the harm that it is doing.

Before Dylan began to take this medication, he could run and play, he could talk and sing. He was a lively and charming little boy. Now he doesn’t talk. He hardly walks. His singing is replaced by unintelligible babble. We watched as our little boy slowly and quietly faded away, and was slowly replaced by a shadow of his former self! I ask you this, “What father among you, if his son asks for a fish, will give him a serpent instead?” Matthew 7:10.  My son can no longer ask me for a drink, or tell me he is hungry! The poison that he has had to ingest for the past 5 years has seen to that.

What parent would do whatever it takes to give their child a better quality of life? I know that me personally, I would tread through the flames of hell itself, if I thought I could find a cure for Dylan. There would be no mountain too high, nor a sea, or dessert to wide to cross. There’s nothing that I wouldn’t do for Dylan. This is just too important.

I am asking my friends, family, and acquaintances to please, please write, share and tell others about this important issue! I implore you! Thank you!

If you are in Maryland and can write the Governor on Dylan’s behalf, Terri and I would sure appreciate it. His email is http://governor.maryland.gov/mail/default.asp

If you’re a resident of Anne Arundel county, I am asking you to send Steve Schuh an email on Dylan’s behalf that email is Steven Schuh at exscu00@aacounty.org . We appreciate it.

These pics are before the Seizures and after the seizures

Daily News!!!

By

Terri King

Dylan has been enjoying his three-day weekend. We had a visitor this weekend, our granddaughter stayed with us again. Dylan and Kendyll seem to be getting along with each other better. Everybody is sleeping right now so I thought I would write a little bit about how my little superman has been. This weekend was fun Kendyll and Dylan are partners in crime they both got caught ripping papers in the dining room. She is too funny she likes to say I pooped all the time she will even sing it, some of the time she actually did poop. But enough about her let’s get back to Dylan and how he has been. He is still having seizures it is never ending with these damn things. It seems like nothing is ever going to work for him. I hope when they get this law passed for the CDB oil that it will help him and get him back some kind of normalcy.

https://www.change.org/p/lawrence-hogan-maryland-state-house-legalizing-cbd-oil-in-maryland

Daily News!!

By

Terri King

Dylan has remained in a wonderful mood the past few days. He is still continuing to have seizures, but the recovery time hasn’t been that long. He has been able to get right back up and continue with what he was doing. It makes me happy to see him in these kinds of moods. It’s hard watching your twelve-year-old son not able to do anything for himself except feed himself and drink on his own. Before all the seizures and all the medications, he was learning to do all types of things like using the bathroom. Dylan was able to sing all sorts of songs. The bathing part is difficult for me now because he is going through puberty and becoming a young man now.

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https://www.change.org/p/lawrence-hogan-maryland-state-house-legalizing-cbd-oil-in-maryland

Daily News!!

By

Terri King

Dylan has been in a wonderful mood the past few days. I love it when he has days like that.Those are the days that make me happy as well. His older brother has been really helpful with getting him ready for school on the mornings he doesn’t go to school.I think his seizures are slowing down since the weather is changing again, but he is still having a few. We have started a petition to Governer Hogan to legalize the CDB oil for the treatment of epilepsy and any other illness that it might help here in Maryland.

https://www.change.org/p/lawrence-hogan-maryland-state-house-legalizing-cbd-oil-in-maryland

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Daily News!!

By

Terri King

Dylan has been having more seizures the past few days because it has been humid outside. As I said before that I think the weather has an effect on him  and how his seizures are.Sorry, it has been a while since I have written anything again, but I have been busy with life. I have been helping my daughter get stuff done for her new job working in schools with special needs children. This morning when I put Dylan on the bus and went to go back down the steps the driver shut the doors on me. I know she had to know I was still on there and all she says is I’m sorry. I’m glad I didn’t get hurt.Dylan has been working hard in school. I know this because he has been tired when he gets home from school. Dylan has some new toys he likes to play with.

This use to be one of Dylan's favorite songs.
This use to be one of Dylan’s favorite songs.
new toys
new toys

Daily News!!

By

Terri King

Sorry, it’s been a few days since I have written anything but I have been busy. Dylan made it through his first week of school. I think he likes it just fine. It’s hard getting him back on the new schedule, but he will adjust to it soon. I just want to tell Sherri thank you for the awesome shirt you got Dylan while on vacation. I think the new schedule is what’s affecting the change in Dylan’s seizures.

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Getting ready for school.
His awesome shirt.
His awesome shirt.

Please sign our Petition

Dylan is 12. He was born with a rare chromosome disorder that has left him moderately intellectually challenged. He also has some cerebral palsy and intractable epilepsy. We have tried so many types of medication and he has even been implanted with a VNS Vagus Nerve Stimulator, which should control his seizures, however, he still has sometimes 6 to 7 seizures on a daily basis. At one time he had between 15 and 30 on a daily basis, but with the combination of medicine, and the VNS, most days he has about 6. The medicine that he is on has very bad side effects and we are hoping to get legislation passed in Maryland to legalize, medical marijuana, and the CBD Oil, that is known as Charlotte’s Web. As his parents we watch our little Superman struggle with these debilitating seizures and we often fear for his life, because of them. Witnessing him seizing is a daily nightmare that no parent should have to see, and no child should have to experience. This drug that is produced from the marijuana plant has been working miracles for others with seizures as well as other disorders. This drug could in fact save our son, and also give him a greater quality of life.

However, this drug is not available in the state of Maryland and the only way that we could hope to acquire it is through illegal measures, or moving to a state where it is legal. It is already legal in 15 other states, but moving is really not a feasible option for our family

CBD oil has been effective in reducing the number of seizures children endure, and because it is a non-psychoactive compound, it doesn’t produce the “high” feeling commonly associated with pot. There is no good reason why this potentially life-saving treatment is being withheld from children like my son.

Please join me in asking the state of Maryland and Governor Larry Hogan to legalize CBD oil for medical use so that thousands of children across Maryland have a chance at a better life.

www.change.org

https://www.change.org/p/lawrence-hogan-maryland-state-house-legalizing-cbd-oil-in-maryland?recruiter=216601051&utm_source=share_for_starters&utm_medium=copyLink

Daily News!!!

By

Terri King

Dylan has been in school for two days now and seems happier since he has got back in the routine of things.I guess I was right about him missing school. He seems to be worn out when he gets home from school because he lays on the couch watching TV till dinner is done.Dylan has had two great days of school so far and that makes me happy. He is still having seizures they seem to happen not long after he is given his medicine.

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First day back to school!!
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Second day back to school!

Daily News!!!!

By

Terri King

Dylan is still having seizures I don’t think any medicine is going work for him. I wish they would hurry up and get the laws passed to legalize the charlottes web here in Maryland. I have a feeling that is the only thing that would work for him. The VNS only helps with the nighttime seizures.Today we get to meet Dylan’s new teacher. I’ve heard good things about her. he will start school tomorrow. I’m glad we get to meet her before he starts. I’m sure he will learn to like her, but he will miss Mrs, Sherri and Mrs, Brook.