Welcome to Andrew's World!! It has been provided to keep people updated about Andrew. Andrew blessed our life on October 9,1997. Andrew is 11 years old, he was diagnosed with Mucopolysacchridoes III-B, Sanfilippo Syndrome on September 17, 2002. Andrew is missing the enzyme that is essential to breakdown Heparin Sulfate. The incomplete broken-down Heparin Sulfate remains stored inside cells in his body and begin to build up causing progressive damage to his brain; stops normal development causes hyperactivity, sleep disorders, dementia, seizures, loss of speech, and life expectancy of 10-15 years.
Sanfilippo syndrome is a progressive disorder, however, the rate at which the children deteriorate varies from one individual to another. The change seen in children with Sanfilippo syndrome occurs most often very gradually, but the disorder tends to have three main stages:
In stage 1, it is noticed that the child starts to lag behind and develops difficult behavior.
In stage 2, the child may become extremely active, restless, and often have very difficult behavior. Some children have sleep disturbances. Many like to chew on their hands, clothes, or other accessible items. Language and understanding will gradually become lost. Some children never become toilet trained and those who do will eventually lose the ability.
In stage 3, the child will begin to slow down. They have more difficulty when walking or running and fall often, eventually losing the ability to walk altogether. There is no cure for Sanfilippo Syndrome. Please help find a cure for these children and helping families by donating to The Isabel Jurado FoundationOn May 18th 2006, Andrew had to get a G-tube. He would no longer take liquids by mouth to keep up with his daily intake of fluids. He has the Mic-Key button. He is doing really well with this. For the last two years we have suspected that Andrew had Hydrocephalus, which is very rare with Sanfilippo Syndrome. Hydrocephalus is the abnormal buildup of cerebrospinal fluid in the ventricles of the brain. In most instances, hydrocephalus is a lifelong condition in that the patient is treated rather than "cured." Presently, there is no known way to prevent or cure hydrocephalus and shunts are the primary method to treat hydrocephalus. On October 18th 2006 Andrew had a VP shunt placed. In July we found that Andrew also has SIADH. SIADH occurs when excessive levels of antidiuretic hormones (hormones that help the kidneys, and body, conserve the correct amount of water) are produced. The syndrome causes the body to retain water and certain levels of electrolytes in the blood to fall (such as sodium).
Andrew, my life was meaningless and empty until you born. You taught me more about life than I could have ever learned. I did not fully understand the true meaning of love and you taught me. Your love was nothing but pure and unconditional and made me fulfilled. I will forever miss your beautiful smile and kissing your sweet little face, seeing your joy as you laugh, hop, and run through the house with excitement. The pure innocence as you threw your sippy cup or knock something into the floor. Just to look at you and be proud of who you are knowing that I am blessed to be your dad. I miss being able to hold you and feel the love as you wrap your arm around my head and lean on me for comfort. I enjoyed being your security blanket and I am glad you chose me for that. I am the man that I am today because of you and I owe you everything for that. I can honestly say that I have a better appreciation for life because of what you taught me. You taught me to enjoy the simple things in life and to enjoy every moment. A laugh or smile a day can overcome all of the insignificant moments and I thank you for that. Andrew, I miss you so much that it would be immeasurable. I enjoyed taking care of you and being there for you. I can not begin to explain the devastation that I now feel. I do not understand why you and so many other children have to suffer so, hopefully someday when we are together in heaven I will. But for now my life seems to have no value and I do not know how to live without you. I loved you more than my own life and I am forever thankful for you. I wanted to let you know what you meant to me and how gracious I am that God selected me to be your father. Forever you will be my son, my best friend, and my precious angel. I love you Andrew.
Your gift will help millions of people stay connected with friends and loved ones during challenging times.
This page has been viewed 39554 times.
Note: The foregoing information was
authored by the patient, parent or guardian, or other parties who
are solely responsible for the content. Such announcements or their
content are not necessarily endorsed by CaringBridge, Inc. or any
sponsoring agent. This information does not confirm that anyone
is or was actually a patient at any facility.
