My daughter, Penelope was born with a rare, genetic syndrome that occurs in one out of every 15,000 births. Born with severe low-tone (floppy) and failing to thrive we began our journey of helping her to thrive. She is now a bubbly, determined, sassy three and a half year old that is reaching many milestones that we once were concerned about her making.
I try to organize a fundraiser each year to help doctors and other experts out there to help us research ways to make living with this syndrome easier. Some of the difficulties include, but aren't limited to anxiety, skin picking, mood disorders, temperature regulation issues, scoliosis, learning difficulties, high pain tolerance,and most commonly known to others, an insatiable appetite.
Doctors today are researching ways to help our loved ones live life FULL and INDEPENDENT. Without their help and expert guidance, mothers like me work to educate medical doctors, educators and general public we come in contact with about this syndrome and fight to help our children.
Please consider donating today. It may mean that one day Penelope and others like her can live there lives feeling full emotionally and physically.