"I came to live out loud!"

Lauren's Story

Lauren was a beautiful little girl who dearly loved life. She saw the world as we all long to see it, with complassion and innocence. She had long, red flowing hair and big brown eyes.

Birth through 2 years of age, Lauren developed completely normal meeting all the milestones of a typical toddler. She could sing her A, B, C's and nursery rhyme songs, count, read books, and put puzzles together. It seemed that memorizing words and motions to songs came very easy for her.

Lauren was quite a little climber and loved to play outside in the yard. She was especially intrigued by television.

Shortly after Lauren’s second birthday, we began to recognize changes in her behavior.

There is one specific incident that we recall as a sure sign of Lauren’s decline neurologically. She burned her hand on mom’s curling iron. She held onto the hot iron as though she was not aware that she should drop it. This delay in her reaction lead to 2nd and 3rd degree burns on her hand. There was even a delay in her cry; much like it didn’t register until seconds later that the hot iron really hurt. Following, she began to lose speech, language, and cognitive skills. Loss of coordination caused her to become very clumsy and resulted in frequent falls. All of these concerns lead to a year of investigating with multiple
specialists and diagnostic testing.

There were many vials of blood drawn, urinalysis testing, and a skin biopsy (it looks like a small circular burn on her right arm). All of which put the pieces of the puzzle together resulting in the devastating, fatal diagnosis of Sanfilippo Syndrome. The years following were very difficult not only for Lauren, but our entire family. Seeing your child develop normally and then gradually lose their abilities to function in life is very difficult. Even with aggressive therapeutic sessions of Physical, Occupational, and Speech therapies, we could not prevent the rapid decline.

Within a year of her diagnosis, Lauren completely lost her ability to speak. Shortly following, her gross motor skills declined until she was unable to coordinate her body to walk. In the last several years of her life, Lauren’s health continued to decline. She no longer has the ability to walk, sit up, or swallow. She was fed by means of a feeding tube and formula. She occasionally had seizures, but they were primarily controlled by medication. She had frequent bladder infections which were controlled by a maintenance antibiotic given once a day. Her immune system was suppressed so colds can easily became pneumonia. The most common infections that we battled were ear and sinus infections due to the thickening of the tissue in her sinus cavities caused by Sanfilippo. Infections around her feeding tube site were also common concerns. Typically, antibiotics treated these infections, but they lead to diarrhea and terrible skin breakdown.

Through fervent prayer, Lauren’s sleeping patterns have dramatically improved. Where she used to sleep only 30 minutes to a few hours a night, Lauren generally sleeps about six to seven hours a night. Sleep deprivation is very common for Sanfilippo children, so we PRAISE God for answered prayers regarding sleep in our household!

Lauren attended school at the Washington Center, which is a school designed for children ages 5 to 21 years with severe mental disabilities. At school, she received therapy for promoting flexibility and maintenance of skills. There were numerous activities that the teachers of this school use to enhance Lauren’s ability to focus and interact with her world. The activities were geared to promote awareness of Lauren’s sensory system. Working with Lauren in a completely dark room with black lights and glow in the dark toys created an environment that was very visually stimulating. Add some soft music in the background, cascading tubes filled with colorful lights, and some thick fluffy material for her to touch and you created her safe haven. We are very grateful to the special people from Washington Center who helped improve Lauren’s quality of life.

Lauren also attended the Special Olympics through her school, which is a great morale booster for these children. Activities at the Special Olympics are designed in such a way that everyone is able to participate. Lauren could touch a bowling ball that will roll down a ramp and knock over the pins for a strike every time! The crowd would cheer and Lauren’s face lit up like a candle. We were very fortunate that Lauren lead a very full and fun life. Like everyone, however, some days wee very hard for her and that could be very trying and emotional for the friends and family that cared for her; especially during illness and hospitalization.

In her last 6 months of life, Lauren had more severe seizures. Despite the efforts of our family and her wonderful doctors, very little could be done to stop them. On Thursday June 5, 2008, she went into the hospital for the last time. Her body was basically medicated into a light comatose state to stop the seizures and keep her comfortable. Cindy and I had to make the decision to keep her off of life support machines on Friday. Then on Saturday, when there was no improvement, we removed all but her comfort measures and let her return to Jesus. Friends and family and those touched by her still speak of her gentle spirit. We miss her terribly but trust that God has healed her body and restored her completely.