Lukie’s Story

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On 01/02/03 Lucas John Valdez joined the world. He weighed 9 1/2 lbs and was 21 inches long. We were so thrilled that our son had finally arrived. The first year was filled with sleepless nights but also with alot of love.

When Lucas turned 1 he began getting sick with chronic ear infections and sinus infections. He had his first set of tubes put in when he was 1 1/2 and has had 2 sets put in since then. In June of 2006 Lucas was hospitalized and had his adenoids removed as well as his tonsils. He also had a hearing test and the doctors discovered that Lucas has congenital hearing loss. At that time Lucas’ speech was that of a two year old and we had hoped that hearing aids would solve the problem but unfortunately Lucas refused to wear them.

On December 7, 2006 we went to Children’s Hospital of WI to see a Developmental Pediatrician to talk about Lucas’ speech issues. At that time the doctor wanted to do some genetic testing and told us not to worry. On January 25, 2007 Lucas was diagnosed with Sanfilippo and our lives were changed forever.

What is Sanfilippo? Sanfilippo Syndrome is a mucopolysaccharide disorder and is also known as MPSIII. Sanfilippo is a recessive genetic disorder meaning both parents must be carriers. With each pregnancy there is a 25% chance of having a child with Sanfilippo. Children affected with MPSIII are missing an enzyme that breaks down strings of a complex body sugar called heparin sulfate. The partially broken down sugar, or muccopolysaccharide, accumulates in the brain and other organs causing progressive damage.Children with Sanfilippo often appear normal at birth and will develop normally for the first year or two, but as more cells become damaged symptoms begin to appear. Eventually the build up of muccopolysaccharides causes hyperactivity, hearing loss, sleep disorders, loss of speech, mental retardation, dementia, and finally death between the ages of 10-15.

There is no cure for MPSIII. Parents are given very little hope.  The Valdez family has decided to fight this disease by raising money for a cure.  “Lukie’s Legacy Golf Outing will be held July 11th, 2009 at 8:00am at Utica Golf Course in Oshkosh.  We would be honored if you could help us in our fight for Lucas’ life!!!

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