Friends and family,

We would like to ask for your love and support for one of our friends, Melanie, and her daughters, especially her newborn baby, Theodora.

Baby Theo was diagnosed with a very serious and rare disease, GM1 Gangliosidosis, before she was even born. When she made her way into the world, she suffered from Hydrops Fetalis. It occurs when abnormal amounts of fluid build up in two or more body areas of a fetus or newborn. It is a symptom of underlying problems. She has had fluid drained from her abdomen a few times already and is doing ok. However, she had blood tests done, and they confirmed she has the most severe form of GM1 Gangliosidosis...Type 1.

GM1 gangliosidosis is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.

The signs and symptoms of the most severe form of GM1 gangliosidosis, called type I or the infantile form, usually become apparent by the age of 6 months. Infants with this form of the disorder typically appear normal until their development slows and muscles used for movement weaken. Affected infants eventually lose the skills they had previously acquired (developmentally regress) and may develop an exaggerated startle reaction to loud noises. As the disease progresses, children with GM1 gangliosidosis type I develop an enlarged liver and spleen (hepatosplenomegaly), skeletal abnormalities, seizures, profound intellectual disability, and clouding of the clear outer covering of the eye (the cornea). Loss of vision occurs as the light-sensing tissue at the back of the eye (the retina) gradually deteriorates. In some cases, affected individuals have distinctive facial features that are described as "coarse," enlarged gums (gingival hypertrophy), and an enlarged and weakened heart muscle (cardiomyopathy). Individuals with GM1 gangliosidosis type I usually do not survive past early childhood.

A few months ago, Theodora was accepted to two different clinical trials for her genetic disorder, and plans were underway to get her enrolled in one of the trials to hopefully extend her life by at least a year or so. But now, all of that has come to a screeching halt.

Recently, Theodora has been having trouble breathing and was also diagnosed with Cardiomyopathy, which is Heart Failure. Theo is now on oxygen almost 100% of the time. Although she can be off of it for short spans of time throughout the day, she must have it on while she sleeps. She is on several medications to manage her cardiomyopathy and the other health issues that have presented themselves due to her GM-1. Because of her most recent diagnosis, Theo no longer qualifies for either of the clinical trials.

We are asking for everyone's help right now. We are starting this GoFundMe to help Melanie with the mounting medical bills and cost of medications for Baby Theo, on top of the ever-rising cost of daily living. Melanie can't work right now because she needs to be at Theo's side every hour of the day to be sure she is properly cared for. Please find it in your hearts to give a donation to Melanie and her daughters to help ease the financial hardships they are facing.