At 4 months old, Meghan was diagnosed with MECP2 Duplication Syndrome. This neurological disorder is characterized by global developmental delay, limited or absent speech, constipation, reflux, low muscle tone, recurrent respiratory infections, gastrointestinal issues, epilepsy, and developmental regression. Children with MECP2 Duplication Syndrome can suffer greatly from a common cold. And, most children don’t live past 18 years old.
As any parent can imagine, the diagnosis was devastating. Meghan cannot walk or talk and is fed through a tube that goes directly into her stomach. She needs extensive physical therapy, occupational therapy, speech therapy, feeding therapy, and supplemental oxygen when she is sleeping. She has battled through pneumonia and other infections that keep her in the hospital for several days, even months. Despite all of this, she remains a happy, go-lucky kid and has a smile that will melt your heart.
This is a particularly exciting time for the MECP2 Duplication community because the Rett Syndrome Research Trust recently committed to funding two extremely promising new projects, both of which attack the root cause of the disorder. These two projects have a total budget of $1 million. RSRT’s MECP2 Duplication Fund has $300,000 that has been raised that can be used towards those costs. We are helping RSRT raise the additional $700,000 needed for these potentially curative projects. Every dollar gets us closer to meeting that budget need. We ask for your support to help change Meghan’s life and the lives of all who struggle with this debilitating and life-threatening disorder.
Amy, Dave, and Ashleigh (big sis)
|Khanh Nguyen||$250.00||February 13, 2020|
|Jean Maase||$100.00||February 05, 2020|