Sight for Skyler

Skyler's Story

We were devastated by the news! We weren't sure what to do, not really knowing how to be parents and now having to learn to be a parent to a blind child.

On Wednesday, February 27th, 2008 we were blessed with the birth of Skyler Madison Goodwin at 10:16am. Two times during labor Skyler's heart beat dropped extremely low. Skyler was born by emergency C-Section due to the improper use of Pitocin given to me during labor.

The first night Skyler was here, her blood sugar dropped, her body temperature would not stabilize and she was having blue spells. The Doctor made the decision to have Skyler rushed to the NICU at Willis Knighton South soon after these problems occurred. Instead of waking up the next morning to being able to hold and cuddle our new baby, we were woken up by the doctor's telling us that our daughter was having problems.

As new parents we were already overwhelmed by the labor and delivery, but now our daughter was fighting to stay alive. While she was in the NICU Skyler faced many tests and treatment, including treatment for Jaundice. She also battled with feeding issues; Skyler would not eat so they had to place a feeding tube to make sure she was getting what she needed. Everyday for 11 days Derek and I were up there hours on end holding, praying and monitoring our new bundle of joy!

I remember the first day she came home...we were so worried that something else would happen...once we got into the routine of things, it was pretty good. Of course we had many sleepless nights and many moments of wondering if we were doing the right things as new parents. As the days went by, we started to notice things about Skyler that we weren't sure were normal for a newborn.

Skyler had to have a follow-up with a Physical Therapist after her stay at the NICU to make sure she was developing her proper motor skills. P.L.A.Y physical therapy took her on as a patient and started to notice the same things we were about Skyler's development. We all noticed that Skyler was not tracking objects and her eyes had a rapid movement to them. They suggested we take Skyler to her pediatrician and have her checked out. After doing so, we got a referral to an Ophthalmologist. The Ophthalmologist confirmed our worst nightmare...Skyler had Optic Nerve Hypoplasia and Nystagmus. Optic Nerve Hypoplasia is the diagnosis of underdeveloped optic nerves and Nystagmus is the uncontrollable movement of the eye. Skyler's optic nerves have good coloring, which means she processes some things, such as light perception, but cannot see.

We were devastated by the news! We weren't sure what to do, not really knowing how to be parents and now having to learn to be a parent to a blind child. The Ophthalmologist scheduled Skyler for a CT scan to check for any other abnormalities, it came back normal. We thought we were out of the woods. Just to make sure, the Ophthalmologist suggested we see an Endocrinologist. The Endocrinologist needed an MRI before she could see Skyler. We had the MRI done and it came back abnormal! Skyler was then diagnosed with Septo-Optic Dysplasia. SOD is the absence of the septum pellucidum of her brain. Little did we know that these two main diagnoses would soon result into so much more! Another requirement of seeing the Endocrinologist was to have a Stimulation test done. We got the results back that Skyler was not producing enough Thyroid hormone. She was placed on a daily regiment of 37.5 micrograms of Levothyroxine.

After finding out all of this news, Derek was due to deploy to Guam for 4 months. He left the day after father's day! For 4 months we continued with doctor's appointments, therapy and a trip to Georgia and South Carolina to get away from the chaos of all of the appointments. Once Derek returned we were able to continue life as new parents. Skyler was now 8 months old and not growing quite as much as she should have. She continued to stay on a growth pattern of less than 3% of the charts and some visits she nearly fell off of the charts. We suspected there may have been a growth hormone issue. Her Endocrinologist scheduled her for another Stimulation test right before Christmas. January 2nd we got the news that Skyler was diagnosed with growth hormone deficiency. We fought for almost 2 months with our insurance and the company that made the growth hormone to get Skyler's medication. Finally the fight was over and the day before her first birthday Skyler started the growth hormone.

We received orders to be stationed at Luke AFB, Arizona on January 30th. We were excited about our move and the better medical care we will have access to for Skyler. One day my mom and I were searching on youtube for ways to accommodate our new home for easy navigation for Skyler. We accidentally stumbled upon a video of a family who took their child to China for Umbilical Cord Stem Cell Treatment. I couldn't believe what I found...I dug deeper into the whole thing because at first it didn't seem real to us! The more investigating we did the better things got. We went on for almost a year with her doctor's telling us that there was absolutely nothing we could do to improve Skyler's sight and pituitary issues....the answer was right in front of us!!! When Derek got home from work I was still crying my eyes out, I told him what we found and after he looked things over we decided we HAD to do this for her!

We had to come up with $35,000 for this trip...being a military family we knew we could not do this on our own. Immediately I started emailing everyone I knew. We got our first $25 donation from a friend, Lauren Mann! I can't thank her enough for making this more real than we could have ever imagined! Since then it has been an explosion of contacting media, churches, fundraisers, etc. This is where we are now...continuing to work hard to get to our goal. For Skyler's 2nd birthday, we plan on being in China working towards getting Sight for Skyler!

To learn more about how you can help Skyler please click this link > > > Sight For Skyler