Kiera is an amazing 8 year old little girl, and overall beautiful human being. She truly touches the lives of everyone she comes across. She is the kid that can make anyone smile or laugh even on their worst day. She just has a way of drawing you in with her beautiful personality. She loves school, reading, competing in chess tournaments, Jiu Jitsu, writing books, yarn crafting and making messes!
In 2011, Kiera was diagnosed with a Cerebral Cavernous Malformation (CCM). Due to a bleed in her brain, she lost feeling and the use of her lower left leg and foot overnight. At the time, surgery to remove the CCM was not an option. Based on the location of the CCM lesion, the surgery presented too many risks. After 3 months of physical therapy, hard work, and with the help of AFO braces (zoom shoes as she called them) to support her lower leg and foot, she was up and walking again. Her parents Jude and Aundrea Ciddio were blessed with several years of primarily focusing on strengthening her left leg and foot, and picking new colors for her zoom shoes of course.
Unfortunately, by late 2016 she started having what she referred to as “tingles” in her left leg. By the spring of 2017 these “tingles” progressed to her leg falling asleep, and were later diagnosed as seizures. The seizures began to cause her to fall several times a day. One day at school, she experienced a seizure which caused a severe fall. She ended up with two black eyes and a huge bruise on her forehead. By the end of April 2017 and into May, she was only able to attend school for a few hours a day, and had to be escorted by mom or dad. By the end of June the seizures were increasing and nothing was helping. At the end of June, Kiera had her first overnight stay at UNM Hospital. After speaking with doctors, adjusting medication, etc., the seizures continued to get worse. They were not only happening 6-12 times during the day, but began occurring at night and disrupting her sleep. Anytime she would fall asleep she would be awoken by a seizure. After feeling helpless and scared for months, the family ended up at the ER for the 3rd time in a 10 day period. Kiera got to the point where she could not sleep without having seizure after seizure. The medication she was given was not helping with the severity or occurrence of the seizures. Kiera was finally admitted at UNM Hospital. Her seizures were so bad that an attempt for an MRI was unsuccessful. Instead, they had to do two CT scans. The results displayed signs of another bleed which was believed to be the cause of the seizures. They spent that night in the Pediatric Intensive Care Unit with little information as to why. They later found out she was so sedated there was risk and concern for respiratory issues; it was a long night to say the least. They spoke to the head of pediatric neurology, the neurosurgeon and various pediatric doctors who wanted to load her with antiepileptic drugs to try and break the seizures, while also discussing surgery to remove the CCM as well as associated risks.
After 10 days at UNM, with seizures peaking at 50 per night, they finally made the decision to go home. They were not making progress at the hospital and the more drugs she was loaded with, the worse the side effects became. They were sure that surgery was going to be the only option. They prayed and hoped if they could just get home, maybe they could get her calm in her own element and get some rest before scheduling surgery. Our prayers were answered, and she was seizure free for over 5 months.
At the end of December 2017, her “tingles” started to return and they tried to do all they could with medication to get ahead of it, but they are getting worse. After countless hours of research, Aundrea reached out to two neurosurgeons; one in Chicago and one in Colorado. She was able to schedule an appointment at the University of Chicago Medicine earlier this month. We have faith in this CCM specialist as he has done numerous surgeries. Kiera’s first airplane ride and out of state vacation was to fly out for advanced testing with a CCM specialist. After speaking with the doctor, it is now clear that medication is not going to be the answer and surgery is needed in order to control the seizures and give Kiera a better quality of life. So, in the next 60 days or so, Kiera will take her second plane ride to Chicago to have brain surgery and remove the CCM. Kiera, Aundrea, and Jude are expected to be in Chicago for at least two weeks. As you can imagine the cost of surgery, travel, housing, and time away from work is tremendous. At this time, they are not quite sure what kind of post-surgery rehab, medical costs, and follow-up appointments will be needed. Anyone that knows my sister and brother in-law, know that they are very private and asking for help is totally out of their element. No one wants to see their child sick or in pain, and when you add exorbitant medical costs to the mix, the situation can be extremely distressing. With that said, they need our help and prayers. I am asking from the bottom of my heart, please help my niece. She has her whole life ahead of her, and deserves a chance at a normal life.
Thank you so much for your help, it is appreciated more than you know!
- Peggy Lyle
- Rhonda Law
- Gene Romero
- Linda Logan
Organizer and beneficiary
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