"Jillian's Story"

Parts 1 & 2

Daniel and Jillian Friedman

Lee County, Florida

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"Jillian's Story"

Part1

 

Hello. My name is Daniel Friedman and this is the story of my daughter, Jillian. Jillian's story is long and complicated, so here is the condensed version.

My wife, Susan and I both love children but were never able to have them. When my wife discovered she was pregnant, it was truly a time for celebration and the anticipation of having our own child.

Things went along smoothly until Susan went into an unexpected early labor. Jillian was born at 32 weeks weighing only 2 lbs. Jillian was then placed into the neonatal intensive care unit for many weeks. We were told that premature babies had many issues to face and no one was certain of our daughterís chances of survival. We knew from the start that something was terribly wrong. Because of a compromised immune system, Jillian was constantly ill. She also needed surgeries on her eyes, for crossed eyes and later on, lazy eyes, and tubes placed into her ears due to constant ear infections. She developed severe allergies and the worst case of eczema I have ever seen. We are still dealing with those issues.

We knew Jillian had some type of neurological problem, because she was floppy, could not sit up on her own, could not walk (although she did try really hard to do so), and the list goes on and on. By the time she turned two, we took her to see a neurologist at the Cleveland Clinic. Many tests later, we were told that Jillian was not only autistic, but was missing part of the vermis covering the 4th ventricle into the brain. The vermis is a membrane-like structure that sits at the top of the cerebellum covering all four ventricles into the brain. The 4th ventricle controls motor activity for the entire body.

Jillianís doctors gave us very little hope of survival and told us to prepare for an early death. We did not want to give up on our child. Many months and many doctors later, it was discovered that somehow, Jillian could survive just the way she was. Her motor issues coupled with the Autism, have made all our lives quite challenging. I want to give my wife all the credit for finding the medical resources and therapies Jillian desperately needed. This is still a work in progress.

Today, Jillian is a happy and healthy 15 yr. old who just started high school at Ida S. Baker in Cape Coral. She is in a special vocational program and we are hopeful that someday she will be able to live independently and become a contributing member of society. Thank you for reading Jillianís story.

 

~Daniel Friedman

 

 

Susan, Jillian & Daniel Friedman

Disney World - July 2009

 

Daniel, Susan & Jillian Friedman

Disney World Theater - July 2009

"Jillian's Story"

"Part 2"

 

Hi Wilbur,

Here is an update to Jillianís story on the Dadís page.

Shortly after Jillian began high school (in 2007) she began to get sick all the time, and started to miss school.  Finally, in late 2008 Jillian was hospitalized at Jackson Memorial Hospital, in Miami, Florida. At that time, we found out that she had End Stage Renal Disease and would need a kidney transplant to survive. It was shocking to learn that Jillian had less than three months to live, and so, the only chance she would have was to have a family member donate a kidney. Fortunately, her Dad was a perfect match and the transplant took place on January 22, 2009. Shortly after the transplant, we learned that Jillian had a very rare genetic disorder called Joubert-Nephronophthisis.  About 1-500,000 people are diagnosed with this disease, and it is very difficult to get a diagnosis until itís almost too late (as was the case with Jillian).  The scientists are all baffled, as Jillian does not meet full criteria for either the Joubert Syndrome or the Nephronophthisis, and remains in genetic studies. This particular disease is somewhat like having and ASD, because it does come in varying degrees with varying symptoms.  Since the transplant, Jillís cognitive abilities have improved significantly, and she is beginning to make gains in school. Her physicianís tell us that she is a very lucky girl and should have a long and full life ahead of her. 

Thank You!!!

~ Susan Friedman

 

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