Lucas counts because he has taught us what unconditional love really is!! He smiles at us with his big brown eyes, even when he can't get his mouth to turn up in smile.
Favorite Hobbies:
Lucas loves to play ball. Although when he totes the football he no longer yells "hike hike hike" which were among his first words at age 1. Lucas loves to eat, and that word still remains as part of his vocabulary. He LOVES watching Spongebob, and the last laugh we heard from him was during one of these episodes.
Proudest Accomplishment:
Lucas has motivated us and our extended family to find a cure. We have several fundraising projects in the wings to raise money for a cure for all children suffering from Sanfilippo Syndrome.
MPS Heroes:
After a five year journey for a diagnosis, we just recently received a confirmed diagnosis from Dr.Copeland at the University of Iowa in January of this year (2006). After only a few minutes in her office in October 2005 we were confident she was on the right track. We did research on the internet and the library during the months that we awaited the blood, urine, and skin tests. We knew it was Sanfilippo well before we received the confirmed results. Lucas exhibited all of the symptoms. We believe that the journey of the unknown was more difficult then our journey through knowing.
Words of Wisdom:
No one knows your child better than you do. We continued our search for answers even when it seemed like no one was listening to us.
Follow your heart, and listen to your instincts. But never set limitations!
Personal Diagnosis Experience:
Lucas was delayed in speech and we brought this to the attention of the pediatrician when he as three, he dismissed it as him being a "late bloomer". Unwilling to accept this, I continued to press the issue and he finally referred us to an ENT. Our journey began with ear tubes, another set of ear tubes to replace the first. Two hernia surgeries. Hearing aids. Several genetic tests which all came back negative. Thyroid tests, sleep study, which showed nothing. He started to lose his motor skills around age 5, no longer riding his bike and he stopped climbing the equipment at the park. We approached the doctors about regressive autism because he was also losing speech, no longer talking in sentences. This seemed to be the closest that we had come to a diagnosis and I pressed on learning all I could about autism. We changed his diet to a gluten, wheat free diet, and we give him rice and soymilk versus cow milk. This helped some of the aggressive behavior and hyperactivity, and he has less occurrences of constipation. In 2005, after 6 weeks straight of sleepless nights we decided we had to find answers. We finally were lead to Dr.Copeland in genetics and our answers came.
