Hello, My name is Danielle Stuart and I am the proud Mom of 2 beautiful girls. I am reaching out today to ask for help regarding the medication needs of my oldest daughter, 13 year old Karly Rose. First and foremost I would like to thank you for taking the time to read Karly's story. Before the age of 1, Karly was diagnosed with Angelman Syndrome and epilepsy. Angelman Syndrome(AS) is a rare neuro-genetic disorder that affects the nervous system and causes physical and intellectual disabilities. Characteristics or symptoms of AS include severe developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome do require lifelong care.
Karly's battle against epilepsy started at the age of 2. I went to check on her in the middle of the night only to find my baby face down in her toddler bed having her first grand mal(tonic-clonic) seizure. With the advice of our neurologist we chose to begin anti convulsant medications at that time. One of the hardest decisions I had to make as a young Mom and that I would ever make on Karly's behalf. We began a medication called Depakote, and Karly continued to take this medication for about 8 years. While taking Depakote, Karly developed many concerning side effects and we decided it was in her best interest to try a different medication. From there began our quest to try and give our daughter a seizure free life with the least amount of side effects as possible. Not an easy task for any parent or caregiver. Karly now has a daily med regimen which includes 2 medications(ONFI & Keppra) both AM and PM. Because her seizures are uncontrolled, she also has a back up rescue med in case of break through seizures which happen very frequently. So frequent that we are once again looking at a medication increase or starting CBD oil.
One of the hardest parts of being the parent of a non-verbal child is that she cannot tell me how these medications are making her feel. She still deals with daily med side effects such as manic laughter, anger, aggression, and regression of skills. Keep in mind that these are just the things I notice. There is no way to know for sure how SHE feels. Yesterday I picked my girl up early from school after a suspected seizure and when I got to her my heart sank. She was non-responsive, eyes glazed over, chin on her chest, and confined to a wheelchair because she couldn't support her own body weight. No sign of my feisty teenager or that gorgeous and contagious smile she is known for. On a good day I have seen my courageous daughter walk independently across the room to find her favorite snack. I want so badly for her to have all GOOD days, but that just isn't the case lately. For most of my daughter's life she has been medicated and I cannot help but wonder what these medications have truly done to her body, mind, physical and cognitive abilities, and most of all her personality. Some days, every once in awhile- it's as if the cloudiness fades away and she looks deep in my eyes with such clarity that it takes my breath away. In those moments it always hits me.."THERE SHE IS"! That's my girl! Then the moment is over and I can't help but always feel like she is in there somewhere. Trapped by the cocktail of meds that "control" her epilepsy.
Our ultimate goal is to start CBD oil and hopefully be able to eventually wean the medications she is currently taking. We truly believe that Karly would benefit greatly from CBD oil. With the guidance of her neurologist she has been approved for her MO CBD card, but we have not yet purchased or started it because of the cost. According to her doctor the amount that she would need based on her weight would cost approximately $300 per month. Unfortunately our family is just not in the financial position to afford paying for CBD oil on top of her current pricey medications. If I could just stop one and start the other, there would be no financial strain but of course things don't work that way. She would need to start CBD and slowly increase to an effective dose before beginning any type of wean. Only then would we be able to begin the process of eliminating medication along with all of the harsh side effects that they have caused. This is why I am reaching out today. To ask for help with the cost of CBD oil and aiding in Karly's fight against epilepsy. There are no words to express how grateful we are, from the bottom of our hearts for any and all support.
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