Meet Batten Families

Averee was welcomed into the world on March 9th, 2004 weighing 8lbs 14ozs. The most precious little thing that you ever did see. Averee was a very active baby – she met all of her milestones at an early age apart from her speech, but we weren’t really too concerned about it.

Averee had her first seizure on June 21, 2007. She was at a grocery store enjoying her bag of chips and talking to everyone that she saw. It was then that Averee started stumbling; I picked her up and she was unresponsive. We took her to the hospital and it was there that they sent her in an ambulance to a bigger hospital two hours away to get checked by the pediatrician. He said Averee was fine and sent her home but she would have to go back a few days later to have an EEG.

Averee had her EEG done but we didn’t get the results until July 16, 2007. By this time Averee already had another staring spell so we knew there was something wrong. The doctor told us that she had an absence seizure. The pediatrician referred her to the Janeway Children’s Hospital. The neurologist gave Averee another EEG and it was then he diagnosed Averee with epilepsy.

The neurologist started Averee on Tegretol. After about two weeks of taking this medication, Averee began to drop to the floor. Then she developed a really bad rash and we found out she was allergic to the medication. While Averee’s condition was declining the nurse coordinator of the neurology department had mentioned Batten disease to us. We really didn’t know much about it so we researched it and decided to get her tested in March of 2008 by a skin biopsy under her arm.

On April 3, 2008 we got the most devastating news ever, something that no parent should ever have to hear – that Averee had Late Infantile Batten Disease. There is no preparation for news like this but we have learned to take it one day at a time. Since being diagnosed, Averee has lost her ability to walk, talk and is now being fed through a G-Tube. It’s heartbreaking to watch your child go through something like this.

Averee is still the happy go lucky little girl that we have always had and loved and we enjoy spending every moment with her.

To learn more about Averee, please visit Averee’s Purpose at www.avereespurpose.ca

Rob Caughey briefly discusses the challenges of raising a child diagnosed with Batten disease.

The sights and sounds of the Holiday Season are all around us. Bright colorful lights, Christmas music, children waiting in excited anticipation of Christmas morning.

During this time of year there is a sense of hope that moves us from the cares of our everyday life to participate in the joy that fills us, the hope of the season, and all the good that surrounds us. We also turn our thoughts to those less fortunate than ourselves even as we plan our holiday celebrations.

It is in this spirit that we ask you to take a moment to open your heart to the story of children that are struggling against a disease for which there is no cure. A disease that robs them of their ability to see, then takes their ability to walk, then talk, and ultimately robs them of a future. This terrible disease takes a bright shining little boy or girl and steals their thoughts, their memories, their understanding.

Our family is one of many families that have traveled this journey with a child – for us our beloved son, brother, grandson Daniel Yanak lost his fight against this disease on December 22, 2003 at what should have been the prime of his life. He was 23 years old. What stole Daniel’s dreams and hopes and broke our hearts? Batten Disease.

Batten Disease is a neurological degenerative disease.

Daniel was diagnosed with Batten Disease in 1991 he was eleven at the time, just twelve years later he died.
Advances have been made in understanding and diagnosing the disease. Twenty years later there is still no treatment and no cure for this disease. Twenty years ago we were given no hope when Daniel was diagnosed. For one child a week, today that is still true.

BDSRA (Batten Disease Support & Research Association, bdsra.org) provides services to children facing this devastating disease and funds research to find a cure. So while you are celebrating this season of giving and hope, love and good will; and while you are celebrating the children young or old in your life, please take a moment to remember there are children today that are hoping and praying for a cure.

Sadly in 2011, 52 more children will be diagnosed with this disease in the US alone. Some children, like our Daniel will lose their battle with this dreadful disease. Please help us change this. We are sharing Daniel’s story with you (www.thebattenproject.com) because he was such a wonderful person, so full of life and because we love him so very much and we miss him every day. We can’t change what happened to Daniel, but we can use this experience to help give other children hope. So please give to BDSRA. Help change the life of a child.