Our latest addition to the Kids Come First Files blog series is a note from a thankful mother that tells a story of encouragement, heart and family.
“It’s hard to wrap my head around the last few months, but I know that we would not be where we are today without each of you. From the beginning, #VCURRTCFamily was there! From the start, you helped us get to where we belonged – VCU!
Lydia is thriving at home, and we are finding a rhythm. We still have many adventures ahead of us, but I know we are not traveling this road alone. There are not enough words to thank you for all you’ve done and continue to do for my family.
It seems not a day has gone by since her birth that I haven’t said up a prayer for at least one of you. From the bottom of my heart, thank you!”
A unique gem
Lydia was born with arthrogryposis multiplex congenital, also known as arthrogryposis or AMC. Arthrogryposis means contractures (curves) of the joints. The congenital (present at birth) condition affects 1 in 3,000 births, reminding us daily that Lydia is quite the unique gem.
AMC looks different on everyone and impacts different joints and areas of the body. In Lydia’s case, her upper and lower extremities (hands and legs) are affected. AMC has impacted her ability to breathe and swallow on her own, requiring a tracheostomy (breathing tube) and gastrostomy (feeding) tube. Lydia wears a variety of orthotic boots, splints and casts to help her gain more mobility. AMC means long days at doctor’s office, therapy appointments and surgeries – but it’s also a chance to showcase how she plans to always do life, ‘Lydia’s way.’