The Hutchinson Family Story:
On May 31, 2016, we were just like any other family expecting a second child. Julia was born in the early afternoon, after a very easy birth. The first two hours of her life were almost perfect, but then we noticed that she had not opened her left eye. After rushing her to the hospital, and three days of tests, worry, fear and grief, we found out that our perfect baby girl was missing her left eye, and had a number of midline anomalies in her brain that would lead to severe developmental delays, epilepsy and, possibly, blindness and deafness.
Officially she has been diagnosed with several conditions falling under the umbrella of septo-optic dysplasia and holoprosencephaly. Among the complications these conditions cause are seizures (up to 200 per day at first, but now closer to 10 per day) and low muscle tone, which led to difficulty breathing and to her receiving a gastronomy tube (G-tube) to eat.
We have looked for other cases similar to Julia’s but cannot find any others with the confluence of conditions that she has. She is our one-of-a-kind Julicorn. We know that she will face challenges in her development, but we are learning patience and celebrating every moment of her life with joy and love!
We are looking to raise money to help cover Julia’s expenses. We wound up with medical bills that we had not prepared for due to the unexpected nature of her condition. We would also like to provide her with therapy and equipment beyond what is covered by insurance. We are grateful for any contribution you can provide. Mostly, we would like to raise awareness of the conditions Julia has, and you can help by sharing this post. Thank You!
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