Charlotte's Story ❤️

Precious Charlotte Faye was diagnosed with a very rare neurodevelopment chromosome abnormality called Pallister-Killian Syndrome. PKS happens randomly and for no known reason. There are less than 500 people who have been diagnosed with this condition.

Charlotte was born with limited hearing and showed very early signs of significant developmental delays. She has several other concerns that led to doing genetic testing. At 8 months old she was officially diagnosed. About a week prior to finding this diagnosis she was hospitalized for having several seizures. It was then that she was diagnosed with epilepsy. Seizures are one of the many characteristics that go along with PKS. This diagnosis explains all of the concerns they've had for Charlotte, even back to before she was born.

Charlotte is followed by many specialists. They stay very busy with a lot of appointments. The rareness of this condition makes it so there are a lot of unknowns. The signs and symptoms of PKS vary from child to child and range in severity. We don't know what challenges Charlotte will face, but we're taking it day by day and trusting in God along the way!

A new thing we are learning about Pallister-Killian Syndrome is that it can be associated with a weak immune system. Charlotte has been sick several times over the last few months. Most recently Charlotte was admitted at UVA Children's Hospital with RSV.

Because of a mixture of the appointments and Charlotte's medical needs, Amanda has not been able to work for several months. Thankfully her employer has been very understanding and supportive and she's been able to maintain her employment status even though she's not actively working, but that doesn't help financially. Kevin is working so hard and providing for their family so well! Going from a 2 income family to only a 1 income, for a family of 6, along with many other added expenses has been very challenging.

I (with the approval from Kevin and Amanda) have decided to create this GoFundMe as an option for financial support in Charlotte's journey. All donations go towards medical bills, travel expenses for appointments / hospital stays, and the general life expenses they've fallen behind on while caring for their sweet girl.

I appreciate everyone who has taken the time to read, share, and/ or donate.