Welcome to Mae's One Small Step page to raise money for the Foundation for Prader-Willi Research. Mae is five years old and a finishing up PK-4 at Two Rivers Public Charter School. She has three wonderful teachers, several therapists, and other staff she adores. She can write her name, loves to draw pictures, especially of people, and is working on counting to 100. School continues to do wonders for Mae’s confidence, independence, and intellectual growth. Outside of school, Mae loves her Tippi Toes dance class, her bi-monthly KEEN exercise classes, doing Lite-Brite, drawing on her dry erase board, going to movies, and (sometimes) playing with her sister Mira, who is now a demanding two-year-old.
Mae’s muscle tone has continued to improve with human growth hormone injections, physical therapy, and exercise. Mae’s biggest setback at this time is her speech. She receives speech therapy at school and has a one-hour therapy session at Gallaudet University each week. Mae has a “talker” (an iPad that has an application that has pictures and words that Mae can select to help her communicate) that she uses at school, and her teacher also has one, as do we at home. Although Mae has not been officially diagnosed, the consensus is that Mae likely has Apraxia of Speech, which is a motor disorder that causes difficulty coordinating the movements necessary for speech. Mae’s vocabulary has increased over the past year, and she is working on speaking in three-word sentences. Mae’s speech will affect her ability to read and write as she gets older and can make things challenging around the house. She cannot express the complicated thoughts in her mind, and we do not always understand what she is trying to tell us. Despite this, we are encouraged with her growth and look forward to the day when we can have more in depth conversations with her.
Mae has not yet started to exhibit hyperphagia, excessive hunger, but she does have a non-typical interest in food. Mae is on a very low-carbohydrate diet. We do not serve her foods with added sugar and strictly limit her intake of foods that are sweetened with non-sugar substitutes. We have special treats for Mae at school for when there are birthday parties or other celebrations, and Mae brings her own snacks each day. This does not seem to bother Mae, and she understands that she has a “special belly.” Mae is an adventurous eater and will try most foods, which makes preparing her meals easier (a job that usually falls to Joe). Mae loves foods like sushi, nuts, and apples, which fall within her diet.
The money you contribute to Mae’s walk goes directly to the Foundation for Prader-Willi Research (FPWR). FPWR funds research and studies aimed at finding treatment for Mae and others living with PWS. The scope of FPWR’s efforts are impressive. A researcher at one of FPWR’s conferences said he had never worked with a rare disease organization as focused and well organized as FPWR. We are excited to receive updates from FPWR about the work they are doing because it gives us hope for Mae’s future. Through your contributions to FPWR, you have been a part of bringing us that hope.
FPWR has raised millions of dollars for research and funded more than 120 individual research projects. Mae has benefited from this research and will benefit from future research. Our hope for Mae is that she is able to live a joyful and fulfilling life – a life she can lead as independently as possible. That hope is more likely to become a reality because of FPWR. One day, we hope there will be medication or other treatments that will lessen the challenging and limiting aspects of PWS so that Mae can accomplish her goals.
If you are able, we would greatly appreciate your donation to FPWR through Mae’s walk. It means more to us than we can articulate. We are confident that your donation will make Mae’s life better. Even if you are unable to donate, thank you for taking the time to check in on Mae. We appreciate your love and support.