Hello, my name is Morgan Ames and I am Natalee's aunt. Natalee has faced medical struggles since birth and although she has received varying diagnosis and treatments, her symptoms have always continued to evolve and have never felt quite right. In December, Natalee experienced multiple episodes of stroke like activity and decline that had her in Rochester before the holidays. The team at Rochester ran a variety of tests to help better understand her condition and identify what could be causing her repetitive issues and decline.

On Monday, January 5th my sister received an answer but not the one we had hoped for. Natalee has been diagnosed with Mitochondrial Disease and is suspected to have Leighs Syndrome (testing is ongoing). Mitochondrial disease in children under 4 often presents as severe, multisystem issues like extreme fatigue, poor growth (failure to thrive), developmental delays, seizures, weak muscle tone (hypotonia), and problems with heart, liver, or kidneys, and brain because their energy-demanding organs struggle. Leigh syndrome in children under 4 is a severe, inherited mitochondrial disorder typically appearing between 3 months and 2 years, causing rapid loss of motor skills (like head control), feeding issues (vomiting, poor sucking, failure to thrive), seizures, and developmental delays, often leading to significant neurological decline. No cure exists, but management focuses on supportive care including physical, occupational, and speech therapies, supplements, and managing symptoms like seizures or feeding issues. . The typical life expectancy in children is three years of age and we are grateful Natalee has surpassed that and is looking forward to celebrating her 5th birthday in March. She is currently showing signs of potential impact in her brain but nothing is definitive. Her team is working to best assess her situation and consulting experts due to the rare nature of her condition.

As you can imagine this is an extremely difficult time for my sister, her family, and our extended family as a whole. Ongoing testing, therapies, and out of state specialist visits are required. Due to the state of her condition and the unpredictability Natalee has had to leave school where she was loved by staff and classmates - a hard decision for everyone. This additionally means tough decisions around my sister working to help afford the cost of Natalee's care and bills to keep a roof over their head and being available to spend time with Natalee and be at her side in the event of medical emergencies. A decision that is almost impossible to make.

The goal of this GoFundMe is to raise funds for my sister to be able to....

In the event of the unthinkable, any remaining funds would be used to allow my sister time to grieve, take care of medical expenses, and fund any end of life services. While we as a family are remaining positive, I wanted to be transparent in the intended use of all funds in best care and worst case scenarios.