Colton's Story

Colton's Story

Colton Dean was born March 8, 1997. He weighed 7 pounds 12 ounces. He was the cutest and sweetest baby there ever was. He had the longest most beautiful eyelashes (a Tay-Sach trait). At first, all seemed normal. He was smiling, trying to sit up, trying to walk in a walker, and cooing. However, he had jerking eye movement, and he always sprawled his legs outward, like a frog. When he was nine months old, we finally admitted something definitely had to be wrong, because he was not growing out of these little things and he was still not rolling over nor sitting up completely on his own. We took him to our pediatrician, who is absolutely wonderful, and he told us it was probably not anything to worry about because Colton was such a big boy, which was totally true, but he wanted to start Colton in physical therapy and sent us to a neurologist just in case. The neurologist performed an MRI and EEG on Colton and all came back normal. She also stated the same as our pediation that he was an extremely large baby and that was probably all it was. I understand the doctors thinking this as Colton was exceptionally large and his head was 'the size of a five year old' although, it looked purportional with his body.

Two days before his first birthday, Colton was put in the hospital for brochitis. After that, Colton started loosing the few abilities he had developed. He started having trouble holding his head up and moving less. Also, he quit trying to talk to us. The neurologist suspected Batten's Disease and wanted to perform another EEG and MRI. The EEG showed up abnormal. She did some blood work and made an appointment with the eye doctor.

When Colton was 15 1/2 months old, we went to an eye doctor and he found the 'cherry red spots' in Colton's eyes. The next day the blood work confirmed Tay-Sachs. The neurologist called me at home, basically told me to take care of Colton the best I could that he would die. I had to call Mike at work. That was the worst day of our life. Everything that we had found on Tay-Sachs all stated that our son was going to die and soon.

Our immediate reaction was to find some research. So, I called the neurologist back and asked her to do that for me. After all, she was the doctor she should be able to find more than me. She called me back the next day or two and said nothing was going on.

I found some research going on in England on a similar disease called Gaucher's disease. The US was supposed to get the drug that fall and we were on the waiting list for that. But now it wouldn't reverse the damage already done so we decided not to try this.

For a few weeks after that, we were all so depressed and we were bring Colton down also. All I could think about was my son was going to die. Then Mike and I did what we should have done in the first place. We put Colton in the Lord's hands. Since that time we have had peace.

We both decided that we could mope around and feel sorry for ourselves or make Colton's life happy and full of love and joy. No matter what his outcome we are going to fill his days to the fullest.

Colton has been in the hospital numerous times for pneumonia and respiratory infections. In March of 1999, we were in the hospital twice for pneumonia. That was a very scary time, because Colton quit breathing once. After these hospital visits, our pulmonologist put Colton on cromolyn sodium breathing treatments. This has helped very much. I also give Colton percussions twice daily.

In April of 1999, we put Colton on some natural products called Mannatech. We also got in touch with a Dr. Vicky Arcadi (Dr. Vicky). Since then Colton has no significant illnesses. He has been able to over come all colds and congested by himself (with the Lord's help). Also, since about the second day on the Mannatech products Colton started having regular bowel movements, which before had been a great problem. Colton had regressed a lot, however, since beginning the products he has remained at that level. He has some head control and moves his arms and legs a little.

In April also of this year, Mike, Colton and I went to New York for the annual National Tay-Sachs and Allied Disease Association (NTSAD) Conference. We got to meet some wonderful children with Tay-Sachs and their parents. We had talked to many of them on the phone and it was nice to put a face to the voice.

In May, we started cranial therapy with Dr. Wesley Jackson on advice from Dr. Vicky. This has been a wonderful blessing. Colton is a lot more comfortable, and this helps keep his immune system up also. I recommend this for any child with Tay-Sachs. One week Dr. Jackson went on vacation and I could tell a big difference in just that week. The day he came back, we went to see him and Colton was better that same day.

In June, Dr. Vicky and Phyllis Libby came to visit us. Dr. Vicky is involved in a Mannatech study and Phyllis Libby has helped numerous developmentally delayed children. They showed us many exercises to do with Colton. Colton improved then regressed again.

In September of 99, Colton got pneumonia from aspiration, so we opted for a g-tube and reflux surgery. As of September of 2000, he has had no significant sickness. He is blind now and very lethargic, but we exercise him. He gets foot reflexology, total body massages and cranial therapy.

He still seemed happy, until he received his wings on Febraury 15th, 2001. He died peacefully at home. Colton is in the Lord's hands and took his first steps with Jesus.

Colton had a healthy brother born December 1, 2001. His name is Zachary Miles. Colton is now Zack's Angel and ours.