Carter’s Full Story

Carter was born a beautiful 8 pound, 4 ounce little boy, with a full head of hair on April 18th, 2005. We had secretly wished for a little boy after we had our daughter and got everything we ever wanted. Carter completed our family. Like Hailey, he was a great baby. So happy and just so funny all the time.

Carter was only 8 weeks old when Hailey began having seizures. He is now nearly 3. His big sister being “sick” is all he’s ever known. He has witnessed the constant seizures and saw her lose all of her skills. Through it all, he has been great with Hailey. While most kids don’t know how to play with Hailey, he does. He is always bringing her toys and showing her how to do things. He hugs, kisses and dances with her all day. He is so affectionate with everyone.

Carter has helped us so much along the way. He is the one that has kept us all going. If it weren’t for him, we don’t know how we would have gone on. He keeps us so strong. He has always managed to cheer us up when we are feeling so sad for Hailey. He is such a good kid. He is so loving and full of energy, a real joy to have in our lives.

We were crushed to learn that he too, will suffer from the same cruel disease. For now, he is developing typically with a mild speech delay. Like Hailey, he has become quite clumsy. He was recently enrolled in speech and occupational therapy. He is still so full of energy, running, dancing, talking some and always smiling… always. He started having seizures a few weeks ago, something we never dreamed would happen to him. We just cannot believe that this would ever happen to one of our children, especially both. It is so difficult picturing him the way Hailey is now. Watching, helplessly, as he losses everything. We don’t know how the disease will effect him yet, but Hailey’s E.E.G.’s were normal for a long time and his are already showing seizure activity. He is also further delayed than she was. We are worried that he will progress more quickly.

The only thing that kept us going before was knowing that Hailey would be better one day. If not, we could live with her disability and we would always have Carter to keep our spirits up. It is so hard now, knowing that is not true.

We do still have hope for something to open up for him in the U.S.. There are currently two trials going on for treatment of Batten disease. However, they have just ended and cannot start back up again for several months to a year. The trials are limited and they are only able to treat 6-18 children. There are currently 200-300 children in the U.S. with the disease and thousands in the world. Upon learning of the diagnoses, we called the doctors that head the studies and literally cried and pleaded for them to put our children on the waiting list. While they were very sympathetic to us, we could tell they had heard it before. They said they would “keep us in mind.”

Time is of the essence when it comes to Batten disease. So much can change in a matter of months, especially years. We just do not have that kind of time to waste. Our children could die while waiting for treatment in the U.S.. They need this treatment now in order to stop the progression of the disease and possibly save their lives.

While treatment in the U.S. would obviously be the better treatment option for him, we can’t wait much longer. We notice regressions in Carter every few months. We have decided that if we do not hear anything from either of the clinical trials in the U.S. in the next few months, Carter too will go to China. We are happy to say that the hospital that has been treating Hailey, has agreed to treat him also, so we would all be able to go as a family. The price tag… $25,000. Please help us make this happen for him. Like all children… he deserves a chance at life.

(Please see our current updates to read about Carter’s current condition.)

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