On April 23, 2021, Hope was diagnosed with Rett Syndrome and other genetic disorders through testing at 11-months of age. Rett Syndrome is a non-curable neurological disorder. This condition impacts every aspect of Hope’s Life. We encourage you to google this Syndrome to find out even more about this condition.
Shortly after Hope’s birth, she showed signs of classic Rett syndrome symptoms of developmental issues such as recurring infections, low body mass, swallowing issues, life-threatening breathing issues, seizure-like episodes, not sitting up, not crawling, not feeding herself, not talking and not walking at time of her diagnosis.
Despite her delayed milestone markers and other developmental issues, she continues to understand far more than she can communicate to someone with a delayed communication deficiency, evidenced by her bright and attentive blue eyes, and her ability to express a wide spectrum of moods and emotions. It has been trial and error trying to figure out her delayed and limited communication skills, but the parents, family and caregivers are learning how she is communicating her daily needs, which will improve in a limited capacity during her lifespan.
Hope continues to be wheelchair bound and now is growing fast into a young, beautiful girl. She needs a handicapped accessible vehicle to make it easier to transport to all her appointments, regular day-to-day travel, and enough room for all her medical equipment. A lot of room is needed just for day-to-day travel.
You can find more out about Hope and follow her journey on Facebook “Hope4Hope” and Instagram “hope4hoperettwarrior.” Thanks for supporting Hope! She is one special girl!