Bridget Rose

Bridget was born on November 11, 2004 and is the youngest of two children. Her big brother, Harrison, will be seven on August 15.

Bridget was always an energetic, lovable, spirited little girl who wanted to go, go, go. Little Miss Busy B could not sit still long enough to learn speech and was admitted to the Early Intervention program at age two, which made a marked difference in her progress. At age three, she qualified to go to our school district’s Early Childhood Program where she continued to make strong progress in speech and learned to love school.

When Bridget’s first seizure occurred on January 22, 2008, the emergency room doctors ruled it a febrile seizure caused by a spike in temperature. The seizure was brief, but the experience terrifying. When Bridget had another seizure in February and again in early March, we were finally able to consult a neurologist. On March 20, 2008, Bridget had her worst seizure yet, lasting 14 minutes. We began a treatment of anti-seizure medication that night, saw the neurologist the following week, had two EEGS and a MRI. Her brain MRI appeared normal, but EEGs were abnormal, suggesting a seizure disorder (epilepsy).

After having the same medication and holding steady, interesting things started happening in June. Bridget would all of a sudden fall over, or trip and fall to her knees. We adjusted her medication, but Bridget experienced another tonic-clonic (grand mal) seizure on August 22. We continued to work with doctors to adjust medications, conduct additional tests, and manage side effects. Bridget became increasingly sensitive to light and began having photosensitive seizures, rearing her head back or fluttering eyes uuncontrollably when light flashes or hits her.

While conditions for Bridget were rapidly declining, we sought the care of the Director of Epilepsy at Rush Medical Center in Chicago, Dr. Michael Smith. In December 2008 and March 2009, Dr. Smith conducted extended video EEGs. With the consultation of Dr. Josh Baron (also at Rush), Bridget received a spinal tap and skin and muscle biopsies.

On April 20, 2009, Dr. Smith shared the results with us. Bridget’s lysosomes were not breaking down the fats or “garbage” in her cells, actually killing the cells. This result paired with her epilepsy diagnosis led us to an initial diagnosis of Batten Disease. This was confirmed with another blood test on May 11, 2009.

There is no preparation for devastating news like this. We knew that our little girl struggled with health and development and that she may not be able to talk. This, however, was far beyond our imagination. In this day of technology, we research and email and call to try and find treatment for Bridget. Dr. Smith has been wonderful, starting Bridget on a regimen of steroids that have allowed her to gain some motor control. We know this solution is temporary, though. Our journey with Bridget will definitely be one day at a time.

Our Bridget’s Favorites

Some of her favorite shows are anything with ELMO, Mickey Mouse, Wonder Pets, Sesame Street and Dora!
Some of her favorite music is Ralph’s World, Laurie Berkner Band, Ring Around the Rosey and Sippery Fish.

Big Brother Harrison

Harrison is the best big brother a girl could have. He is our “spy guy,” helping whenever asked, protecting his little sister from harm’s way. Bridget looks up to her big brother and he never refuses her. We are truly blessed to have a son like Harrison.

Our Family

We are celebrating our 10th wedding anniversary this year (July, 2009). It went by quickly until our story changed in 2008. Not only did Bridget begin having seizures, but Sara was diagnosed with stage 2 breast cancer. She will celebrate her first year of being cancer free on Sept. 9, 2009. Sara is a Reading Specialist teacher in Barrington, IL and David works for a commercial aircraft lessor in Lake Forest, IL.