Matthew Wulf Case History, Years 10-18

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The last three years had been years of continuous, remarkable achievement for Matthew. Most notably his communication and written expression progressed beyond anything we imagined. With the cochlear implant Matthew’s receptive capabilities soared. Matthew’s brain acted like a sponge, absorbing into memory most of what he heard, and, more importantly, he showed an extraordinary ability to recall, reason with, and use information. He especially enjoyed listening to or reading the Bible, biographies, poetry, books on factual knowledge, and mysteries. Matthew became interested in attending to educational videos both visually and auditorily, thereby enhancing his education by leaps. Due to his unanticipated development, Matthew was able to attend regular curriculum classes via DVD, and maintained an honor roll student status.

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Due to Matthew’s impressive working vocabulary,  his expressive language made great gains. A speech pathologist observed and stated that Matthew had a gift of putting words into concepts, uniquely developing his expressions. The beauty of his thoughts captured in essays and poetry were compiled in his book, Awake Not the Hungry. Additionally, since Matthew had always shown a keen interest in music, he enrolled in private music composition classes resulting in his music compositions being played at recitals, such as the Musical Art Society Program (A Program of Music by American Composers). Remarkably, Matthew chose both creative writing and music as expressions of his language.

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In time, various assessments in speech, physical therapy, visionhearing, occupational therapy, and orientation and mobility were administered to Matthew that confirmed his progress at school and at home.  When Matthew took his fifth grade achievement tests, out of the nine categories, he scored above the 95th percentile in six, four of those were 100%.  A  psychological evaluation  by the public schools confirmed his grade level status.

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In the medical arena, it had been a mix of good with difficulties. Matthew remained on a daily dose of hydrocortisol to supplement his adrenal insufficiency, and needed a stress dose when ill. For the first nine months of Matthew’s thirteenth year, he experienced a change in his infrequent atonic seizure pattern, crossing over to clonic-tonic seizures. A careful study associated a majority of the incidence of his clonic-tonic seizures with a rise in the ACTH hormone just before clinical symptoms of illness appeared. Matthew took no anti-convulsants on a daily basis due to the adverse effects he had experienced while taking them. Weighing nearly 70 pounds, Matthew had entered puberty. In spite of his medical setbacks, he became highly motivated to push the confines of his disabilities to the sidelines, not letting his diagnosis define him in his eagerness to experience and embrace life.

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From where Matthew began with his vision impairment  compared to his visual function today  impressively testifies to the treatment of DHA-EE, for it is clearly outside of the natural history  of Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome).   The disorder of Zellweger’s is a disorder of deficiencies, deficiencies we found supported by DHA-EE, cholic acid, and hydrocortisone.  Later we would discover how important the supports to the hepatobiliary pathway really were for Matthew!

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Graduating from eight grade with honors, Matthew was asked to deliver the graduation address at Endy’s graduation ceremony. Matthew delivered a moving message to his audience using his dedicated communication device.

Due to the high level of supports provided for his hearing, vision, communication, and motor deficits, as well as a protective, safe environment with familiar consistent staff added to the medical and educational community’s supports, Matthew has succeeded beyond our highest expectations and has within his grasp a bright future…despite having the diagnosis of Peroxisomal Biogenesis Disorder (Zellweger’s Syndrome).   We were blessed to have the right doctors at the right time in Matthew’s life with the right supplements.

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Life Beautiful!!!

Life Beautiful!!!

 

May 15, 2016 Matthew Andreas graduated from high school with honors.  See High School Graduation

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