MY DAUGHTER NEEDS YOUR HELP!

If we don’t know she is having a seizure, we can’t help her, and it could prove fatal. Medication is no longer maintain the seizures so her neurologist highly recommended that she is a candidate for surgical intervention. Her neurologist also stated that Kailey would be on bed rest for 6 weeks post-surgery. Without the surgery Kailey may not survive another silent episode.

Please read on to find out more about how we got here and how your help/donations will help my little girl grow up.

There is a story within all of us. But for those of us who don’t yet have a voice we look to the ones who we call our support system to enlighten the world on the thing most people don’t see.

Kailey’s story:

Kailey is an 8-year-old charismatic girly girl who loves all things Disney princess, ballet, dance, and music. Her larger-than-life personality speaks for itself as she enjoys speaking her mind and educating anyone who would listen to what life as a princess is all about. Throughout the course of her life, we ran into certain alarming issues here and there which at the time I presumed was growing habits. School was difficult as I constantly would get calls from her teacher that “she was a sweet child but tends to drift away often from reality.” On January 30, 2021, when she was 7 years old, I witnessed her first seizure. At the time I didn’t know anything about epilepsy and the different ways a seizure can present itself. As time went on, Kailey continued to present strange behaviors where she would be present one minute and spaced out the next as if she wasn’t even aware of place and time. Over time as her behavior and mood would switch randomly, I started to pay attention as to how long she would go into these trances and how she acts while under such. Incidents began to take place as I notice she started inflicting harm to herself as well as others. Her pediatrics doctor advised me that she could just be ADHD and needed to be placed on meds, but my mother’s intuition wouldn’t rest as I believe this had to be something a lot deeper than ADHD. Another incident occurred while she was at school where she climbed the teachers’ desk and as the teacher attempted to help her down, she began attacking the teacher. I picked her up from school that day and took her to the emergency room. After several test and observations, the doctor concurred that Kailey’s brain waves where misfiring and showed several seizure activities. A diagnosis of Epilepsy was made. Immediately the doctors began prescribing medication as the seizures were happening back-to-back. Medicine upon medicine we noticed that Kailey was rejecting the medication. She would either vomit, present with a decline in her academic performance, negative impact on her cognitive functioning etc. Finally, after several different medical fails her body accepted Vimpat. Although her body hasn’t rejected the Vimpat it has not been that beneficial as it makes her extremely drowsy and emotional.

Impact after diagnosis:
Being diagnose with epilepsy has been a lot to take in on its own especially in the middle of a world pandemic. I am deeply concerned about being a single mom to a daughter experiencing this, as it has made it really difficulty to maintain a job as I’m constantly having to go doctors’ appointments, speech classes, physiatrist, and other services to keep her health intact. My whole life had to change and adjust to this new normal. Struggling to keep a job has caused some issues with ongoing bills such as mortgage , living expenses and things of that nature. There were days that we had to go without due to low funds. This new normal has affected my mental health and coming to terms with everything. Being a mother to a young daughter I don’t have the luxury of showing fear and worry as I must remain strong and present to help my daughter through these ongoing seizures. Currently, Kailey’s seizures are not yet under control and her doses of Vimpat is being gradually increased to try to alleviate her brain from misfiring and ultimately seizing. Since her diagnosis Kailey has had to say goodbye to cheerleading, gymnastics, and ballet as she is not able to currently participate in these activities for her safety as well as others. There is still so many unknowns regarding what is causing her to seize and how to handle such but one thing that was recommended to me from her Neurologist and other health care providers was that she would need a service animal to go through life with.

Action Plan:
I have done my research and came to terms that she must undergo the recommended surgery her neurologist had instructed me to consider. I am currently fundraising and asking all my family and friends to spread the word around. Even with insurance, I am facing many out-of-pocket expenses such as travel, medical, recovery treatment, and home accommodations. As we embark on getting Kairo fully trained and prepared for his new job we need your support now more than ever. The real benefit of having this surgery done is to keep her brain a moment to rest to hopefully move her towards seizure free days. There have been numerous occasions that resulted us going to the emergency room since others were not aware that my daughter was having seizures. It really takes a village, and my hope is to find those who are willing and able to help me give my baby girl a chance at life again. Donations to Help Hope Live can help ease the financial burden my daughter and I are facing. I thank you in advance for your consideration, thoughtfulness and your kindness which has not gone unnoticed.

Family and friends of Kailey Osias are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Kailey has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!