Meet Lilly Pihir. A sweet, loving, toddler who battles with an aggressive Seizure Disorder. Help our sweet Lilly get a night time seizure movement monitor & raise seizure awareness! Most of Lilly's Tonic-Clonic seizures occur over night and they are intense. We need to raise funds to purchase a seizure movement monitor. This will give us peace of mind & we will know that her chance of surviving is increased dramatically. Help us, help Lilly.
Lilly’s Journey Page > www.facebook.com/love4lillypihir
June 27, 2010 Lilly Pihir had her first Tonic-Clonic seizure. We had just arrived at my parents house. This was 24 hours after her 6 month vaccines. She went from giggling and clapping to being stiff, shaking violently, & barely breathing in a matter of seconds. It was terrifying. I remember kneeling next to my 6 mo. old daughter, seeing her eyes rolled back in her head, unresponsive and holding her hand, telling her to breathe. I was screaming & begging for God to save my baby.
The paramedics arrived with in minutes and Lilly continued to seize all the way to Cincinnati Children's Hospital. Her seizure lasted roughly 25 minutes that day. The doctors did MRI's, a spinal tap, blood work, you name it. They tested for it. They kept us for a few days to monitor Lilly. She had no more seizures while we were there & they let us go home. They told us that everyone is allowed to have 1 seizure in their life with out being diagnosed & put on medication.
Less than a week later Lilly had another intense seizure, lasting nearly 20 minutes! After a long stay at Cincinnati Children's Hospital and many tests they diagnosed Lilly with having a, "General Seizure Disorder". They don't know why she started having seizures. She baffled them. We've tried different medications & combo of meds. They either worked at keeping the seizures at bay for a short while or they made Lilly completely angry & groggy to where she couldn't function daily.
Seizures are a big part of our lives and we've accepted that. What we can't accept is the fact that we could lose our little girl any day. We count our blessings each day for the time we've had with her. Now, nearly 3 years later we are still battling the seizures and medication side effects.
It is imperative that we raise the funds for her Noah's World LLC Bed & medical expenses. That will provide her the protection se needs. She will be unable to throw herself or fall out of bed.
During her mood swings she becoes a danager to herself. This bed would provide her the comfort she deserves ane more importantly needs.
Along with her seizures she battles an aggressive bipolar disorder, lack of coordination, sever constipations, globally delayed, and is currently non-verbal.
Her neurologist does not expect Lilly to ever be seizure free but our goal is to get her down to less than 3 a month. The kind of seizures she has are the Mother of all seizures! Tonic-Clonic seizures can cause long term brain damage or worse, death. Because of Lilly's seizure disorder she is globally delayed. She has mentally been half her age since the seizures began due to brain damages she incurred. She needs additional therapies to challenge her and help her grow. She needs the Noahs World Bed. Unfortunately, our insurance will not approve them and we have appealed them already.
Please help spread the word! RAISE SEIZURE AWARENESS!
Lilly needs you. We need you.
Team Lilly ROCKS!
Love, Tiffany, Chris, Lilly, & Jacob Pihir