Tommy Brancheau is eight years old and has been fighting his illness since birth. As a newborn it was expected that he would not live more than a few months. After he shocked the doctors and regained his health, he spent the first few years of his life as a very happy high spirited child but he had many restrictions. He had limited contact with others for fear of contracting any illness that his body could not handle and the most prominent problem of ongoing pain. With improvements in his health there were still concerns that lead doctors to think we would be fortunate if Tommy made it until his seventh birthday. Around four years old, Tommy amazed everyone and had shown few symptoms of any illness other than his constant pain, difficulties with walking, and occasional weakness. For the first time he was able to go outside and play with friends and even went to school. The pain was bad but Tommy and our family learned to live with it and adjusted our lives to accommodate him in such a way that he barely realized there was anything different with him than other children his age.

The decline in his health began to appear again about one year ago and he started rapidly deteriorating over the past nine months. With each organ taking it’s turn failing or malfunctioning, he has been through severe chest pain, heart problems, failing eye sight, blind spells, periodic loss of feeling and use of his arms and legs, continued decline in strength and energy, incontinence, and weight loss. At this time his lungs are failing and his oxygen levels drop periodically into the low 40’s, a critical situation. He also has times where he stops breathing throughout the night. One thing doctors all agree on is that Tommy’s muscles and nerves are all deteriorating and his brain is sending out signals but his body is not responding.

After eight years of searching for a diagnosis, a couple of weeks ago a genetic test finally revealed that there is a mutation in the neurofilament of his chromosomes. This points to a very rare form of Charcot Marie Tooth with Neurofilament Mutation but his symptoms do not fit the diagnosis. The doctors at the University of Michigan said it is difficult to know for sure if this is what he has since it is such a rare disease and his symptoms do not match. The only disease that Tommy’s symptoms do fit is called Spinocerebellar Ataxia AT strand, but the genetic test was unclear and a definite diagnosis was not given.

With no more ideas and a child that has puzzled doctors for eight years he was referred to the Mayo Clinic in Minnesota. Tommy’s doctor has contacted Mayo Clinic and we have been told that there is hope of a definite diagnosis. Along with this, after eight years of being told we don’t know what is causing the problem or how to help him the doctors have told us that there is new research available that has treated and even cured some people with mutations in their neurofilament. They did not have the exact same thing as Tommy but there are several diseases of the neurofilament and what helps one disease will help all of the neurofilament diseases. Again this has been the first sign of hope we have had for our son ever. After being told for eight years to appreciate the time we have with Tommy and try to make him as comfortable as possible, this was the only time it has ever been said that we can help Tommy.

The problem we are facing now is that while the help is available through Mayo Clinic and it is not covered by his insurance. Tommy has Strait Medicaid and they are not willing to pay the amount that the Mayo Clinic charges and the Mayo Clinic will not sign the contract with Medicaid that says they will accept their partial payment as payment in full. The end result is that there is no coverage at all for services at the Mayo Clinic and this is where Tommy must go for any hope at a future. In addition to Strait Medicaid Tommy has Children’s Special Health Care and Adoption Medical Subsidy but since Medicaid is not participating with the Mayo Clinic then neither of the other two insurance companies will cover the services.

Since we do not know exactly what will be done when we arrive at the Mayo Clinic, what tests or procedures will take place, we do not know the exact dollar amount we will need, only that they think they have the answer to an eight year question. At this time we have several consultations set up and tests will be ordered and completed following each of the consultations. The hospital staff said we should bring at least $100,000.00 to our appointments in May.


A little about Tommy
Tommy has a strong faith in God and has always tried to please others. Regardless of how much pain he is in, Tommy always tries to put a smile on other peoples faces. Everything Tommy has been through has shown him a different world making him a compassionate and caring young man with a genuinely kind heart. His short term wish is that he stops hurting and has enough strength to go back to school and play sports with other kids. His long term goal is to be a doctor and help people like the doctors have tried to help him. He says he wants to be the kind of doctor that finds out what is making people sick, figure out how to help make them better.

Even though Tommy is losing some of his brain function he is still very smart and loves to learn about everything he can. His best friend is his five year old sister Destiny whom he is always looking out for and trying to make her happy. Tommy’s favorite thing is anything to do with the cat family, especially tigers and jaguars. Since he does not have much energy he spends a great deal of his time on the computer where he loves to search about different animals and learn how different things work.

Currently Tommy sleeps an average of eighteen hours a day and is on oxygen most of the time. He takes over twenty-five pills a day that helps with some of the symptoms but nothing has slowed the progression of this disease. He does have his times where he can get out and play, within his limits, for a couple of hours and he lights up filling our hearts with joy just to watch him play. As the days go by, these times filled with energy are getting fewer and further between. Some days are so bad that we fear to step away from him in case he stops breathing again.

Over the past week Tommy has watched us search for any funds we can think of, make flyers asking for help, and heard us discussing what we could sell in attempt to raise some money for his medical care. Despite everything I have been through with him as a parent, feeling helpless while he cries in pain throughout the nights, nothing has broke my heart like it did when Tommy asked me a question yesterday. In a quiet and calm voice Tommy turned to me and asked "Mommy, do you think we are going to have enough money to make me better?" As I broke down into tears and hugged him his little sister ran out of the room and came back with a jar of change they have been saving for almost a year and she said to me with tears in her eyes, "Will this help make my brother better?"

With Tommy’s medical care and expenses already draining our finances we are left with no way to pay for his care other than to turn to others in hope that someone can find it in their heart to reach out and help our son who deserves a chance to experience life.

As it has taken me quite a while to write this through all the tears, I would like to thank you with all my heart for taking the time to read it. I know how busy life can be. It took my son to show me that life can be so busy that we sometimes pass right by the things that are most important to us. We have learned to slow down and experience the greatest joy in the world, watching our child smile.

Tanya and Joshua Brancheau