If you would like to help an AMCer like this one, click here to donate to Helping AMC Families Incorporated
Harper Rae Castleberry
My age: 20 months
My favorite things to do: Swim, play with my big brother, visit with our horses and chickens
Number of siblings: One
Number of surgeries to date: 2 so far
Assistance provided: Help with the high cost of a local intensive therapy session
Adaptive equipment can make a
Harper Rae was diagnosed with AMC at 20 weeks gestation. At the 17 week prenatal appointment the doctor suggestion that Harper Rae may have clubbed feet and wanted her to be checked in utero by a maternal fetal medicine doctor. It was at that later appointment that the diagnosis of Arthrogryposis was given.
Harper Rae’s parents were given the worst case scenario and told what to prepare for. Her mom immediately started doing research and connected with other families going through the same experience. Harper Rae was born on December 3rd and was found to be affected in both her upper and lower extremities. Her hips were also affected and her neck was hyperextended. She spent her first four days in the NICU.
Thankfully, the connections her mother made during the final months of her pregnancy led her to Dr. Feldman at The Paley Institute in West Palm Beach, Florida. At just 6 weeks old, Harper Rae and her family took their first trip to The Paley Institute and started serial casting on both of Harper Rae’s feet. She then had a surgery called a tenotomy on both ankles. They continued to make trips down to The Paley Institute every three months for new splints.
In June 2022 Harper Rae had an elbow release on her left arm. Her arm was stuck completely straight since birth but the surgery gave amazing results and she can now bend it to about 115 degrees.
This month Harper Rae will be attending an intensive therapy session in Spring Hill, TN. She will have therapy two hours each day, five days a week, for three weeks straight. Hopefully she will be able to work on standing while there!
In the near future Harper Rae will need a knee and hip surgery so the family is ever so grateful for the donors who allow Helping AMC Families Incorporated to assist with large medical expenses such as these necessary therapy sessions. Every little bit helps, even if it’s to alleviate the strain for the next big expense AND every bit of help makes a HUGE difference in the life of these families.
Flash Forward to 2023!
An update from Harper Rae’s parents
Harper Rae is working on standing and will be having a double knee and hip surgery in February of 2023!
If you would like to help an AMCer like Harper Rae,
click here to donate to Helping AMC Families Incorporated
Nana : Would you rather be rich or kind?– AMC Princess Ana & Nana
Ana : Kind
Nana : Why?
Ana : Because kind people do beautiful things.