The Isabel Jurado Foundation

The Isabel Jurado Foundation

Help for Today. Hope for Tomorrow.

 

 

 

Isabel's Story
Contact the Isabel Jurado Foundation Mom's Daily Thoughts Frequently Asked Questions Sitemap

Isabel's Story
Double-click video to show it in full screen mode
If you are having difficulty viewing the video, try clicking on this link.
On May 23, 2005, the day after Isabel's third birthday, Jimmy and Leslie Jurado received news that their daughter had a catastrophic metabolic disorder. "After months of worrying about Isabel's development and discovering a hearing loss that was not present at birth, we now knew what was going on with our baby."

Catherine Isabel Jurado was born on May 22, 2002 weighing 6 lbs 12oz and was a healthy full term baby. She quickly got the nickname “Izzy.” She was what people call a “colicky” baby and cried a lot the first few months. After the colicky stage wore off at about 4 months she was a happy, sweet baby who loved to be held and cuddled. Izzy had her first ear infections at age 4 months and they continued one after the other along with a constant runny nose. Izzy did have an ultrasound performed through her fontanel at age 9 months to rule out hydrocephalus because she had a large head circumference. The results were normal. At a year old Izzy loved books, baby dolls, and blocks. Her development that first year was normal. At times we would hide the books because she literally wanted us to read them all day. If you tried to skip pages, Izzy was quick to correct you by flipping back to the right page. Izzy began to speak around age 13 months. This is also when her problems with diarrhea began. Her words were slow to come and then around age 18 months we noticed that she was not developing new words like other children. Speech delay was the first red flag for us.

Starting at age 20 months we experienced a whirlwind of hearing tests, allergy tests, speech evaluations, stool samples, genetic testing, and a brain MRI. We were told that everything was normal except a mild speech delay. Isabel started changing. Her shy calm personality turned to loud and defiant. Her attention span started to decrease. She could no longer sit and listen to books. Everyone insisted it was related to the terrible two's. We were not convinced. Then in February 2005 while Isabel was having her tonsils and adenoids removed an ABR (auditory brainstem response) hearing test was performed. This confirmed a moderate hearing loss that was not present at birth. Just a month later a friend read something about MPS disorders and showed it to Isabel’s grandmother. She noticed that many of the symptoms of MPS were similar to what Isabel was experiencing. She shared the information with us…it did not detail the prognosis for this disease. Our hearts stopped as we read the words terminal on the internet. We insisted on having Isabel tested even though our pediatrician assured us no to worry about this. Almost three months later we received her diagnosis. MPSIIIA.

Isabel is almost five now and is well into the second stage of this disease. Since her diagnosis at age three she has lost all speech, most of her understanding of language and she is dependent for all self care. She is very hyperactive and has sleep problems. She can still walk and even run but her cognitive skills are so low that she has no safety awareness. As is common with this stage of the disease, Izzy has to chew on something most of the time. Isabel does not understand cause and effect so behavioral interventions have not been successful for her. She needs her environment set up to met her needs. That includes mostly soft toys since she throws everything, no small toys as she puts them in her mouth along constant supervision and containment to keep her safe. We have a fenced in back yard for her to play safely and a safe room with a television for when she is awake at night.

Though Izzy requires a lot of care she is a HUGE blessing in our lives. We adore her and cherish every smile and giggle. She has changed our lives and our purpose. We hope that by hearing her story you too will be changed. Life is short. Life is unpredictable. But God is good and He always has a purpose.

 

á