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$485 of $10,000
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11 donations

This fundraiser ended on 02/27/11

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The Belle Project Fundraiser is to help raise money for Belle and her family with operating expenses and living expenses for 2 months.

The Isabella Sway Jordan Story...

Isabella Sway Jordan was born June 15th 2007 in Hastings Nebraska. Three hours after she was born, she was sent by helicopter to the University of Nebraska Medical Center in Omaha. There, her father and I found out she has a genetic disorder called fronto-nasal dysplasia. This disorder is very rare. When Belle was born the soft spot between her eyebrows along with her nose and her uvula where not fused together like they should have been. As a result, her eyes are a little farther apart than normal and she has a cleft nose and uvula. After she spent a week in the NICU in Omaha, they cleared her to go home. My husband and I moved to Iowa about two months after she was born which is how we got involved with the University of Iowa Children’s Hospital.

Isabella’s doctor in Iowa Falls Iowa got us in touch with the neurology department at the hospital. Dr. Alexander Bassuk was the first doctor we talked to about Belle’s condition. She was around 4 months old at the time. A few months later we went back to Dr. Bassuk and he thought it would be best to see Dr. Arnold Menezes, a neurosurgeon and Dr. John Canady in otolaryngology. They both came to the conclusion that Belle needed a CT scan. We got it done and Dr. Menezes told us that Belle’s skull was prematurely fused together and she needed surgery to correct the problem.

At ten months old, Belle had her surgery. Dr. Menezes and Dr. Canady both preformed the surgery. When all was said and done they told us what they did. They cut Belle open from ear to ear across the top of her head. Once they got inside they proceeded to break her skull apart and shape the pieces to form her head, they also took her forehead off, flipped it around, broke it apart and shaped it. They rebuilt her eye sockets and opened her nasal passages. She was in the PICU for two to three days of the ten days we spent in the hospital. The remainder of the time was spent in the children’s ward of the hospital.

Belle did extremely well in the hospital. She recovered nicely and we were set to go home. A few weeks after the surgery Belle’s eye started to swell up. I took her to the doctor in Iowa Falls and he was able to get in touch with Dr Menezes and got me a prescription. The eye swelling eventually went away. Not to long after that, part of Belle’s scar started to swell. Again, I went to the doctor in Iowa Falls and he called Dr. Menezes. I was told to get to the University to get it checked out by Dr. Menezes himself. I went back every two weeks for at least two or three months. Eventually everything was back to normal and the best part was that I didn’t get charged for one of those visits! Dr. Menezes was more concerned about Belle and how she was doing. He wanted to make sure she recovered properly.

I hope this story helps a lot of you going through a similar situation. Surgery can be a scary thing for anyone and it is especially scary for the parents to have to put their child’s life in the hands of someone else. I would recommend all of the doctors and their staff to anyone for anything. Dr Menezes and Dr. Canady both did an amazing job with Isabella. If it wasn’t for them, Belle probably wouldn’t be with us now. She is now 20 months old and is learning new things everyday. I am amazed by the way she has recovered. I’m sure she will have a long, happy, healthy life because of the University of Iowa doctors and staff. My husband and I will be forever grateful to all of the people that helped in any way with our daughters care. Thank you!!

Written By Izzy's Mommy.

Since I wrote this story, my husband and I have been researching Isabella’s condition as much as we can. My husband came across a website for the International Craniofacial Institute in Dallas TX. We made an appointment with Dr. David Genecov for a consultation. While we were there we also saw a geneticist. Her name is Dr. Angela Scheuerle. We were very impressed with the knowledge these doctors had concerning craniofacial problems. Up until then we never really got any straight answers about what was going on with Isabella. No one had ever worked with this type of disorder before.

We also found the World Craniofacial Foundation. They have helped us tremendously with a place to stay and reimbursements for meals while we were in Dallas. The second time we were there, we found out that Isabella was ready to have her surgery. This surgery will consist of moving her eyes closer together and adding more bone to her nose. This is why we are doing an online fundraiser. We need money for her surgery and our living expenses for 2 months. We will be there 2 months because we have to have a consultation 2 weeks prior to the surgery with Dr. Bradley Weprin, a neurosurgeon that works with Dr. Genecov. She will spend one week in the hospital, if everything goes well, and she will have two post-op visits 2 and 4 weeks after her surgery.

Another organization that has been extremely helpful to us is Miracle Flights for Kids. They have gotten Belle and I flights to and from Dallas both times we have gone. If you would like any more information about the hospital or the organizations we are working with, you can visit there websites. The International Craniofacial Institute is www.craniofacial.net. The World Craniofacial Foundation is www.worldcf.org. Also on this site, you can click on the WCF Kids link to find Isabella’s picture. Click on that to see a short story about how we found there organization. Miracle Flights for Kids is www.miracleflightsforkids.org.

I want to thank everyone who has donated money so far!! We are deeply appreciative of your generosity. I will keep updating this until we are back home from Isabella’s surgery. Thanks again!!

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