the inspiration and ringleader of MBFC. Just before her second birthday, Maeve was diagnosed with Angelman syndrome, a rare (1 in 12-20,000) neurogenetic disorder caused by a deletion on her 15th chromosome. For Maeve, this has caused significant developmental and motor delays, sleep disturbances, seizures, intellectual disability, and lack of speech. Happily, it also means she has an excitable, joyful personality and a contagious cackle!
Because of the tireless work or organizations like the Foundation for Angelman Syndrome Therapeutics (FAST) and the Angelman Syndrome Foundation (ASF), there are numerous drugs in varying stages to treat and even cure AS! We support them in hopes that Maeve and her fellow “angels” might one day be given an opportunity to walk and even run, to speak, to sleep well, and to live without seizures. In the meantime, research is being funded, families are being supported, and AS clinics are being made available around the country for families like ours.
Reagan’s Journey seeks to make life better for children with all sorts of special needs in western PA by offering family support, events, and a lending closet for durable medical equipment sharing. RJ fills in the gaps created when insurance timelines, growth spurts, and unique family needs collide.
**Loving Maeve has taught us that every human being has immeasurable value and worth no matter what they achieve, simply because they are made in the image of God. We know that Maeve and every one of us are fearfully and wonderfully made, that His awesome works might be displayed. Our true and steady hope is in the Lord!**
Organizations we support
exists to advance the awareness and treatment of Angelman syndrome through education and information, research and support for individuals with Angelman syndrome and their families.
seeks to make life better for children with special needs through unique family events, a lending closet for durable medical equipment, and raising awareness to improve communities in southwestern PA and beyond.