After a typical pregnancy and successful labor, my husband, Adin, and I received devastating news in 2010.
Our 6-week-old daughter, Sadie, was diagnosed with Aicardi syndrome, a rare genetic disorder that occurs only in girls and can cause multiple seizures each day, severe developmental delays and low muscle tone. Most girls with Aicardi Syndrome are non-verbal and unable to walk.
I was shattered. I remember telling my family that I wasn’t strong enough for this life. But as shattered as I was, I knew had to find the strength to give Sadie the best life possible.
Sadie’s pediatrician referred us to JourneyCare’s pediatric All About Kids program. While her medical needs were tended to by a team that included a doctor, nurses and a social worker, All About Kids also provided experts to care for my daughter’s mind and spirit. Sadie received music and massage therapy, volunteer support and had a dedicated Child Life Specialist on her team – a professional who helped our family deal with fears and emotions surrounding serious illness through play and self-expression.
I wish I could convey to you the full extent to which JourneyCare’s All About Kids program helped, but its value is impossible to articulate. JourneyCare’s home visits gave me peace of mind knowing that Sadie’s health was being monitored. Not only would they check her vital signs, pulse, oxygen, and listen to her lungs, they would also discuss her care and answer our questions about upcoming procedures and issues with doctors. So often, our nurses went above and beyond.
We lost our beautiful daughter in 2013, yet we remained close with Sadie’s care team. I honestly don’t know what we would have done without them. Today, I know so many other families can benefit from the same care – some who do not have the financial means. JourneyCare helped change the face of serious illness for our family, and I hope sharing our story will inspire others to generously help JourneyCare change the face of serious illness for many others, too.