Millie along with her parents Amy & Nathan, her Aunt Judy & Uncle Hugh, and her cousins Will & Wes (Lizzy's parents and brothers), all want to inform and spread awareness of Pitt Hopkins Syndrome, to let researchers, educators, and doctors know there is a fund for those interested in improving the lives of Lizzy and her friends with Pitt Hopkins Syndrome. When Lizzy was 13, her parents found out she has Pitt Hopkins Syndrome. For 13 years, they rode an emotional roller coaster of various diagnosis: Rhett's Syndrome, Autism, Cerebral Palsy, Angelman's Syndrome, Fragile X Syndrome, to name a few. They had settled with Liz having "Lizzy Lou Syndrome" and enjoying their beautiful, happy, and determined daughter. It was through a research grant Dr. Sashi at Duke University invited Lizzy and her parents, Judy & Hugh, to participate in that finally discovered Liz had Pitt Hopkins Syndrome. If they had not had the opportunity to participate in this grant, the diagnosis would have cost them over $10,000, none of which insurance would fund.
Since having the diagnosis, Lizzy and her parents have met hundreds of other parents and their children, vitually via the power of the internet, with Pitt Hopkins Syndrome through the International Pitt Hopkins Support Group. They have in person met three families, one from Winston-Salem who started the support group with a friend from the Netherlands! They have learned that many of the other children have seizures, severe hyperventilating episodes, intensive gastrointestinal issues, and many of them have had to experience extended hospitalizations for these medical challenges. Judy and Hugh have also learned that Liz has been blessed with lots of early interventions, therapies, and world class health care. (Thanks to smart local doctors, therapists, and teachers, as well as Duke and UNC-Children's Hospitals being right down the road!) Lizzy has had orthopedic surgeries and many therapies, all with successful outcomes. She continues to need close monitoring of her neuromuscular system (hands, feet, and hips are affected), sensory integration, communication, and gastrointestinal concerns. She hyperventilates, but so far has not needed further medical attention for that. Through years of hard work, determination, and a never-give-up attitude from Lizzy as well as her parents, she has participated in Special Olympics in swimming, horseback riding and bike riding. Lizzy always has a smile on her face and the purest laugh you've ever heard. She LOVES music (you should have seen her at the Il Divo concert she & Millie attended with their family recently!). She is an inspiration to her family and to all who meet her and her cousin Millie couldn't be more proud of her.
Lizzy's parents decided to join this year's campaign for funding research to support finding a cure, as well as improving the treatment and therapies for Liz and others with Pitt Hopkins Syndrome as they feel there is so much more to be done. Many times doctors and specialists, even at Duke and UNC, do not know about Pitt Hopkins Syndrome. Many of the families have doctors and therapists telling them they know more than they themselves as doctors do about the medical condition affecting these children! That is scary!
Since Pitt Hopkins is a very rare genetic disease, there are NO other sources funding this research. The Pitt Hopkins Foundation was started by parents and runs on NO administrative costs.....all volunteers...so 100% of donations goes straight to funding research! We hope you will consider supporting Millie while she raises funds for this research and making a change for Lizzy and others with Pitt Hopkins Syndrome. Millie thanks you and sends you a big hug and smile from her beloved cousin Lizzy: HOPE IS IN HER GENES!!!
Millie asks that you PLEASE take a moment to watch this video about Cal, a beautiful little boy with Pitt Hopkins: http://www.youtube.com/watch?v=naCu4k6ZSDg
and this news segment about Victor, Lizzy's friend from Winston who has Pitt Hopkins: http://www.youtube.com/watch?v=hEMG7W-I8UY
You can learn more at: http://pitthopkins.org/
Millie recently had a lemonade & cupcake stand and she donated all the money she earned to the Pitt Hopkins Foundation too! Thanks to her sweet neighborhood friends who helped out that day. She hopes to have another before summer is over. :-)
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