ZOE MARIE
This is the story of our daughter, Zoe Marie, born on March 10, 2004. Zoe was given her name from the Greek word, Zoe, meaning life. Her life is a true miracle to us.
Zoe's birth was quick, less than 2 hours. She was taken from my arms right away and was given to a Neonatologist. She had swallowed a large amount of meconium during delivery. In addition, the Neonatologist, along with my husband, were alarmed with the disturbing sound her hips made when they were rotated. They heard a heavy 'cluck'. After a number of ultrasounds on her hips, we were told Zoe had sever bilateral hip dysplasia and she would be in a Pavlik harness for the first six months of life to help estabilish hip sockets.
During her first six months, she could only move her head and arms. From her shoulders down to her feet, she was strapped in a harness that kept her lower half immobile and in a frog like position. We could not take her out of the harness, not even for a bath. At her six month check-up, we were told the hips looked good but we should follow-up with x-rays every year until she is 18 years old.
Following the removal of her harness, we noticed our daughter felt very 'doughy' and she could not hold her head up. We informed the doctor, but she told us to give her time to strengthen. Two months later nothing changed. Zoe was not developing like a normal child. The doctor told us she had bypotonia and hypermobility and we would have to see a Geneticist and Neurologist to help explain the origin of this condition.
Zoe is being seen by Geneticists and Neurologists but no definitive diagnosis has been rendered. She is also followed by a Cardiologist because she has a heart murmur caused by a biscupid aortic valve. She sees an Otolaryngologist because of the fluid built up in her ear canals which caused a lack of hearing. And she is followed by her Orthopedic Surgeon for her bilateral hip dysplasia and pronation of her feet.
Zoe did not sit up until she was 9 months, did not crawl until she was 1, did not stand until she was 15 months and did not walk until she was 19 months. She started babbling when she was 2 and started using simple words when she was 2 1/2. She undergoes a battery of genetic tests every 6 months to rule out various conditions.
At the age of two, Zoe started tripping when she would walk. After x-rays, we were told her hips have shifted out of their sockets again and she would need to be in a Cowboy Harness, while she sleeps, for 1 1/2 years. In addition, Zoe wears SureStep braces on both of her feet for severe pronation.
We have seen a considerable improvement in Zoe's condition ever since she began therapy at 9 months. She undergoes Physical, Occupational and Speech therapy twice a week to help with her developmental delays. We have seen strides in her condition and are so happy to see her improvements. However, when she turns three, all of her therapies with our insurance will be exhausted and the government will not longer provide therapy through the Early Intervention Program. We are afraid with the lack of therapy Zoe will regress and will lose any progress she has made.
Zoe is a beautiful girl and you can see her desire to be like everyone else. We want to give her everything possible to help her improve but we cannot afford to continue therapy at a rate of $1700 per month. We have two other children and cannot finance the cost involved with therapy and continuing to support our family. We thank you for the time to hear our daughter's story and appreciate any help you can give.
Maria (Zoe's mother)