Lilly (Lil Boo) and family need your help!!
Donation protected
Hello everyone. I am making this gofundme on behalf of my close friend from high-school Brandi Clark for her beautiful baby girl Lilly (aka Lil Boo). Since her birth in 2010 Lilly and her family ran into a lot of medical issues that took a long time to diagnose. She mainly suffered from having many seizures and muscle deficiencies. She has since been diagnosed with several different genetic disorders such as; Autism Spectrum Disorder, and ADHD. It wasn't until she turned ten that her family learned that a rare developmental condition called ZTTK Syndrome and Mitochondrial Disease was causing her frequent seizures and concerning lack of energy. Being that these conditions are so rare it has been a battle for her family to properly keep her symptoms under control. On the night of June 11th 2022 Lilly had a very serious/aggressive and life threatening seizure (unlike any one she has ever had before) which caused her to become completely unresponsive and paralyzed on her left side. She was then rushed to Cleveland Clinic in Indian River County FL. From there she had to be transported via helicopter to Nemours Children's Hospital in Orlando, FL. Over 2 hours away from home. After 6 days of being unresponsive, having several CT scans, MRI's of her brain and spine, spinal fluid tests, blood withdrawals and another genetic test done.. Her family finally has answers but it wasn't good then good news they were hoping for. Much of Lilly's brain is showing signs of extremely damaged cells. With the second MRI it's been concluded that she also suffered a metabolic stroke causing even more damage and loss of brain tissue. During her initial seizure she had a nasty fall and they found three fractured vertebrae in her spine. Not only has she been unresponsive for a week and still unable to move the left side of her body at all She is in extreme pain as well. The left side of her face is drooped and she is hooked up to a feeding tube and several IVs. The doctors are telling Mom and Dad that she will have to stay in the hospital for several more weeks. Upon discharge she will be receiving in home rehabilitation along with physical therapy and occupational therapy 6 days a week. Mom just had a baby and has been out of work for 7 weeks with no maternity pay and Dad having to take time off as well to help with Lilly and her conditions has run out of sick/vacation time and their funds are very low, especially with the cost of living these days. What was supposed to be a happy chapter in their lives with their new baby girl and Lilly being a big sister everything has turned upside down and has become traumatic for this once happy family. My friend and her husband are quite possibly the most selfless and loving human beings you will ever meet both are hard-working and inspiring. They have had to overcome so many obstacles that no parent should ever have to encounter. They both have changed so many lives for the better and now they need that in return as they do not deserve the hand that has been unfairly dealt to them. With being over 2 hours away from home and expecting to be back at work by now they desperately need help with gas, hotel/housing, loss of hours missed from work, food and bills. Any and all help is appreciated. If you are unable to donate please at least share this to as many platforms as you can. If you're uncomfortable donating through here they have cash app; $LilBoo2010. Again these guys are the most amazing people I've ever known, your help and support is much needed and greatly appreciated. We all love you so much Lilly!! Stay strong Brandi and Billy!!
Organizer and beneficiary
Ashleigh Larrabee
Organizer
Vero Beach, FL
Brandi Burney
Beneficiary