Dx Cerebellar Ataxia: Zac’s Success Story [UPDATED]

Zac’s story of hope and hard work
UPDATE

Zac today – handsome, smart and determined
Zac, a little boy with a lot of challenges

What do parents expect after attending the “What To Do About Your Brain-Injured” course?  A program to help their brain-injured child?  Mutual support from other parents?  Guidance from staff members of The Institutes for the Achievement of Human Potential?  Knowledge and deep understanding of how the brain works?

Yes, all the above.

However, many parents report the most important thing they take home from the course is hope or a strong renewal of the hope they were in danger of losing.

Zac was premature and had to struggle right from birth

This the story of Zac.

Little Zac was born 35 days before his due date. Within 72 hours he became jaundiced.  He was in the hospital for 4 long weeks. His Mother remembers “When Zac wasn’t reaching developmental milestones in his first year of life, we started to become concerned and seek medical help. We saw many medical professionals including pediatricians, neurologists and geneticists. Doctors could see there was a problem but didn’t have much to offer Zac, as his condition is quite rare.

Parents could not believe that their beautiful boy could not be helped

Parents were told there was no treatment for cerebellar ataxia – wait and see.

After many tests and a lot of waiting, Zac was given a diagnosis of Recessive Cerebellar Ataxia. We were told there was no treatment for this and the best thing we could do was take him to physiotherapy and speech therapy and to wait and see how he went. There was no clear idea of what the future held and whether Zac would ever walk or talk.

We were shattered.

We did the recommended therapy for a little while, but with minimal improvements, we became increasingly frustrated and started to research for what else was out there.

The family arrives for their first visit to The Institutes

“The course taught me there was hope for Zac’s future”

When Zac was four years old Mother attended the “What To do About Your Brain-injured Child” course. 

Mother remembers: “It taught me there was hope for Zac’s future and we could make a difference in his life. That the brain grows by use and, if stimulated correctly, with frequency, intensity and duration then the possibilities were endless for our boy. That was all we needed to hear. We weren’t afraid of hard work, we just lacked the knowledge of how to help Zac.”

At that time Zac was functioning at the level of a three-year- old except in mobility – he was creeping and could not yet walk. In manual ability he was at the level of a seven-month- old. Upon returning home, parents designed a very strong program that included oxygen enrichment, nutrition, and tactile stimulation. His physical program included lots of creeping and his intellectual program set him on a pathway to learn how to read.

Zac with his staff advocate, Rumiko Ion Doman, Vice Director of The Institute for Physical Excellence

Zac learned how to read and write and began to walk and speak in sentences for the first time.

Seven months later Zac made the trip to The Institutes to meet the staff and be evaluated at The Institutes. He was able to read well enough to get a Reading Victory. Zac returned home and continued to work very hard on the new program that the staff outlined for him.

Rumiko teaches Zac and his parents how to enrich and challenge Zac by providing vestibular stimulation and opportunity – essential when the cerebellum is not functioning as it should be.
Zac’s parents make sophisticated, large print books that he loves to read

In the year that followed Mother gave birth to Zac’s little sister. Zac’s program had to take a back seat for a little while so that the baby could have the time and attention she needed. Then Mother did a brilliant job creating an environment that would provide the appropriate stimulation and opportunity, not only for Zac, but for the baby as well. Mother made sure that the baby would benefit right from day one from a truly enriched environment designed to provide new information for the baby on purpose rather by than by accident.

During these two years although we did not see Zac he began to take steps, he learned how to write and he began to speak in sentences. His speech improved so much that even friends outside of his immediate family began to understand his speech.

At Zac’s next visit he could walk 100 meters. He was fond of telling long stories, and expressing his ideas and opinions. He often asked his mother to write them down. Although he had a history of sleep apnea, he now slept soundly and deeply at night.

Physical Excellence

School Days

Zac’s exhibition at school
Building his hydraulic hand

Holidays with his family

Helping at his sister’s birthday
Snorkeling
Playing Giant Chess
Paddle boarding by himself

Update

Zac entered school full time in the fifth grade, he was physically independent indoors and outdoors, and doing well academically at his peer level. He took on additional physical challenges regularly; high rope courses, climbing army nets four stories high, and rock climbing. He was very healthy and robust. His swimming coach could not believe his ability to hold his breath underwater! In his free time, he is enjoying computer coding. 

Today, almost two years later, Zac’s mother writes:   “Zac’s reading and math are at grade level, and so is his writing composition, especially when typing. He is learning Spanish, and continuing with computer coding. We are so proud of his academics, as he had missed so much school in the beginning, and is still up with his peers. He is currently building a hydraulic hand! He still loves LEGO and is a lovely boy, with lots of love to give everyone. Overall, he is much more stable and capable. He can carry crockery from the table to the kitchen, and is completely independent at home. We are happy with his progress, but still have work to do. We will let him enjoy his primary school graduation in December, and then get to work next year at home for high school. We feel we can make a better program for him, maintaining his academics, while increasing his physical fitness, we think we can get him in better shape at home. I want to get him strong and fit, ready to tackle everything. We are very excited about next year, and highly motivated. We think Zac will have a great future, and plenty of opportunities!”

Today Zac is above his peers in some areas

Zac’s Mother’s advice: “We would advise parents to get started on the program as soon as possible. If you wait, you lose precious time in helping your child get better.”

The family is the answer when children need help – a beautiful family that proves this beyond any doubt

Congratulations to Zac and his dedicated parents. Zac’s parents would not believe that their beloved son could not be helped. Their fighting spirit and hard work are helping Zac to have the real life he richly deserves to have. Keep going, Zac, we are with you!

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