Driven to give Special Needs Children More
Who is Gideon?
Gideon is Greg and Lindsey’s gorgeous, wide-eyed little man. He’s known to many as Wiggles. His medical journey is a bumpy one that originally sparked the dream of Serenity Valley Hemp Company.
This sweet boy was born stiff and able to hold his head up. We knew that wasn’t the norm. Yet, despite our inquiries, the doctors and nurses ignored us saying that he must be special.
Over the coming months, at his well checks, we told his doctors about his camptodactyly, torticollis, scapula up at his neck, etc. They still ignored our concerns. Finally, at around 6-7 months, we saw a doctor that didn’t ignore these issues.
She sent him out for studies. The MRI showed 3 malformations in his brain (polymicrogyria, pachygyria, and lissencephaly) that were nestled under the diagnosis of idiopathic CP, cerebral palsy. Like so many other patients, the EEG at time was normal. Despite that, we were told that he would most likely end up having seizures at some point in his life. We simply hoped for the best and refused to dwell on the what-ifs.
He has dysphagia, a swallowing disorder, from complications of cerebral palsy. Dysphagia causes problems when there is congestion due to illness because he can’t swallow to eat and breathe at same time. At around 8 months old, he needed a nasogastric tube for his bout with RSV, a 5-day hospital stay. His most recent swallow study shows that he silently aspirates (food enters his lungs which can be deadly and is often the cause of death for those with CP).
He battles with hypertonia (very tight muscles) in his limbs and hypotonia (very loose muscles) in his core. He can’t stand without assistance or walk. He cannot sit up without assistance. At 2.5 years old, he is still working on tummy time and rolling over. He needs physical, occupational, and speech/language therapies. Gideon has to use AFOs (leg braces) and hand braces for part of each day. At night, he has to wear braces to keep his legs from bending at the knee, which would inevitably shorten his hamstrings and cause even more movement problems. He also needs therapy to learn to use his oral-facial muscles to eat. Currently, he requires thickened liquids by bottle and has a highly specialized diet.
Luckily, his intelligence is untouched. Although he can’t talk yet, he has a good grasp on language and can make clear choices. He does make some sounds and loves to laugh and giggle.
To our dismay, the seizures began in November of 2016. The first one occurred at home and he had another on the way to the hospital to get checked out. The hospital physician diagnosed him with tonic-clonic, AKA grand mal, seizures. Keppra was prescribed to manage the seizures. He now suffers with Keppra rage, which is eased with B6 supplementation. An EEG later confirmed that he has epilepsy.
CBD oil is well known to alleviate epileptic seizure activity as well as help with some muscular issues associated with CP. It is a much safer alternative to traditional medications, or at the very least, a very valuable supplement that can change the life of the patient. Out of pocket, CBD oil can cost $300-$500 per month for treatment. This was way out of our price range. Hemp is a source of CBD oil and can be used to make many other environmentally friendly products. Thus, our dream was born–to provide Gideon with a regular supply of CBD oil and sell it to families like ours at a much lower price point.
It’s been one hell of a ride. Our prayers and hopes are with this hemp farm and the miracle of CBD oil. Our family desperately wants to help Gideon and many others like him, all while bringing hemp and, possibly, hemp by-products to the US market.