Charlie's Battle for Freedom

We are reaching out to the community in hopes of raising some funds to help our son Charlie who has been diagnosed with intractable epilepsy; our families unfortunately cannot afford to cover the associated costs of consultations and medications (Cannabis based treatment). Our first consultation is expected to take place in approximately four weeks time at the Ottawa Canabo Medical Clinic and it is with a heavy heart that we ask for help from our friends, family or anyone so generous as to offer donations to our cause. It would mean the world to us for those of you reading this to take a few minutes of your time to listen to our story. My son Charlie “Cheekies’ Cash Lockhead contracted GBS Meningitis at 18 days of life.  We battled the infection for three months in the hospital before we could go home again. It was long after we had arrived at CHEO convulsions began. The damages left throughout his brain were described to us as extensive; what challenges Charlie would face as he grew older were unknown. When he awoke for the first time months later, we first noticed that his eyes would not meet ours. He could no longer see us or his surroundings, damages to his vision processing center within his brain had left his cortically blind.  The muscles all throughout his tiny body were tight and his ability to move extremely limited; his belly arched towards the ceiling, arms completely retracted, fists clenched so tight they would take a year of casts and physiotherapy before he would use them purposely. My Charlie had been reborn into a new world of terrifying challenges. Through a trial of various anti-epileptic drugs we had come to learn that Charlie had been affected by a rare condition known as Infantile Spasm, where hypsarrhythmia is seen while the child is sleeping on an electroencephalogram. The American Epilepsy Society best defines infantile spasms as one of the “catastrophic childhood epilepsies because of the difficulty in controlling seizures and the association with mental retardation.” The seizures are brief body spasms, when a spasm occurs, the child’s body bends forward or backward suddenly. The arms and legs stiffen. The spasms happen in clusters. Often the child will have multiple clusters of spasms at a time. The child may have as many as hundreds of spasms throughout the day- this was exactly the case for my son. Charlie was treated aggressively with a powerful steroid type medication known as Prednisolone; fortunately it was able to stop the main concern (hypsarrhythmia) but did not offer control of his seizures in any regards. Consequently Charlie now suffers from adrenal insufficiency; a condition where the adrenal glands do not produced adequate amounts of steroid hormones. He still requires daily amounts of steroids to stay alive, and promptly requires ‘stress dosing’ when he becomes ill or requires emergency medical care to avoid coma or even death. We keep vials of steroids and syringes close to Charlie at all times. At approximately a year old Charlie began to loose all of his abilities once again, he had become very quiet and seemed more confused than usual; his eyes began to sink down into his head which had slowly grown to an abnormal size. It took sometime before doctors were able to indentify that Charlie had been affected once again by another brain related condition known as Hydrocephalus; CT scans revealed that the fluid within the center of his brain had accumulated to dangerous amounts, causing the pressure to increase within his skull. The CT image was horrifying. Image if you can, a healthy ripe orange in the palm of your hand, with a pancake placed tightly around that orange. The orange in this case was overly accumulated brain fluid, and the pancake was now Charlie’s crushed brain matter. Over the course of 5 years my son had undergone 6 surgeries in attempts to address this condition. Shunts are mechanical devices that break and clog with time; each surgery is awful for him. Incisions in the head, neck and stomach with each revision; drill holes into the skull to access the center of the brain. Recovery post operation takes months each time, and the pain is confusing and frustration for him because he doesn’t understand why this is happening to him and we have no way of explaining it because Charlie is not able to communicate verbally. About two years ago Charlie was diagnosed with intractable epilepsy. We have tried every anti-epileptic drug available, including almost two years of the ketogenic diet. The epilepsy foundation website describes intractable epilepsy as a seizure disorder in “which seizures are frequent and severe enough, or the required therapy for them troublesome enough, to seriously interfere with quality of life.” Following the failure of the ketogenic diet in 2015, Charlie was referred to the palliative care team; it was at this time his doctor explained to me that Charlie would likely not survive his childhood.  Palliative care physicians are put in place in situations where an illness has been diagnosed but continues regardless of whether or not the child receives treatment directed at the disease; pain and symptom management become important at this time. Present day Charlie continues to suffer through many forms of seizures each day. The seizure types which have been identified but are not limited to include: tonic clonic (grand-mal), gelastic seizures (focal or partial), and Absence seizures. It isn’t always easy to put a name to exactly what is happening to his body, but he spends a great deal of time each day in fear, unable to play or communicate. Lately Charlie has spent a great deal of time frozen inside of his body, often following seizures. He has spent days at a time sitting completely still while ‘staring’ at the ceiling. Multiple trips to the emergency department over the past few months to deal with this unusual behavior has not offered any clarity on what is happening within his brain; the medical community does not know how to fix the problem. Instead Charlie is loaded with steroids and sedatives with each visit, hours later we return to our home and hope things will be better in the morning. Charlie has recently received a referral to the Canabo Medical Clinic to explore the idea of treatment through cannabis. The synthetic anti-epileptics his is currently taking are increasing to high levels with little efficacy and have began to leave their scars on his health; Each day and night Charlie takes high doses of anti-epileptics including Keppra, Ruffinimide, Valproic Acid, Clobizam to try and tame some of the seizures he has each day. To deal with neuropathic pain the palliative care team has prescribed him Gabapentin twice daily. The endocrinology department meets with us many times a year to discuss his Cortef (steroid) guidelines, and offers a 24 hour telephone service through the hospital in case of emergencies – this doesn’t include visits to Charlie’s pediatricians.   With so many medications to take each day and the constant seizures he experiences, Charlie is often tired. He sleeps for long periods of time or conversely is unable to sleep for long periods of time due to persistent seizure activity. Even through his prognosis is not a positive one we continue to fight for his quality of life - he cannot fight for himself.  We love our little man and we are so proud of him in everything he does. He has changed the lives of so many people around him, and anyone who knows him or has met him will tell you how truly sweet and beautiful he is inside and out. We appreciate your support and thank anyone who has taken the time out of their day to read our story.