Happy 1st Birthday Emma Zupko!

We want to share with you some more stories of the children and the families we work with. Today we will introduce you to Emma  Zupko. Her father found us, like so many parents after exhaustive searches on the internet. He watched a video online of Anat working with “Elizabeth” rushed upstairs to try a move out on his daughter and saw something in her response that he had never seen before! It led him to us both for lessons for his daughter and to enter the training to become a practitioner. Here is some of their story;
Emma will be 1 year old this weekend
To date she has been diagnosed w/ a rare genetic disorder called “Fryn’s Syndrome and complete agenesis of the Corpus Callosum.
She does not have a herniated diaphragm which is a life threatening characteristic of Fryn’s Syndrone. Most infants do not survive the first months of life because of the herniated diaphragm.
She was born with extreme Hypotonia, uncontrollable/unexplainable tremors throughout her entire body, feeding delays(g-tube), GERD(reflux), cortical blindness, peripheral neuropathy, extreme developmental delays, extreme irritability, sleeping issues,   and a  few other  minor issues.
Her prognosis was/is a big question for the medical industry: ”WAIT AND SEE”. The best Drs. In the world could only shrug their shoulders and tell us that “Emma is teaching us”. Fryn’s Syndrome has only  a handful of living survivors, so using prior cases as a benchmark for her development is not possible.
Emma began ABM at 4 months of age. Her tremors had gotten a little better but were still a  problem.
To Date:
1.       Her tremors are almost gone. They are apparent only when extremely tired and still they are very mild.
2.       She takes a bottle in small amounts and has two meals a day with baby food(spoon fed). Her initial ass. was that she could not be mouth fed and questionable whether she ever would.
3.       GERD is not an issue because while having her g-tube surgery she also had a nissen done.
4.       Emma’s vision was just re-evaluated  two weeks ago and the doctor was extremely happy to say that she sees signs of vision
5.       She has become a very happy baby and smiles and talks all day long.
6.       I question whether she has neuropathy or not. But she has begun to move a lot more and seems to have become ticklelish. Her movements are still that of a very young infant but they are so much more  than she ever had . her startle reflex is more apparent.
7.       She is aware of her family and will often turn in the direction of one’s voice or give us a smile.
8.       Irritability is just about gone and her crying is more like the characteristics of a normal child. i.e. , hungry, tired.

Emma has lessons with Marcy Lindheimer in New York and Kathy O’Neil in Pennsylvania. Here is an e-mail that her father just sent to Marcy concerning the  latest lessons;

Hello Marcy,
After  Emma’s lessons last week with you and Kathy, I felt the need to give you a follow-up.  She is doing great !!  She has been in a great mood, smiling all day long, and a lot more inquisitive about her surroundings. Her sleeping has greatly improved and just the other day she decided to drink 6 oz. instead of her normal 2 0z. We have taken your advice on her head positioning and that has helped tremendously. Other family members have noticed a great improvement in her neck strength and positioning as well. The list goes on!!
Equally important, last week’s lessons have given my wife and other family members a refreshing breath of hope for our little angel and has given them the opportunity to see what possibilities can be reached with Emma and their own lives as well. Tiny miracles are happening all around us and there are no words that express my thanks. Acceptance is a huge obstacle for parents with children with special needs, and seeing results so quickly and beautifully, only helps.
I am forever grateful that there is such thing as You-tube. It was what drew me to ABM. I was convinced by the first video of Anat’s work that I saw. I can only imagine the feeling You, Kathy, or any other practitioner must have when seeing such huge results with children. I am so glad I am in the training and only hope, that as a practitioner,  I may have some of the results I’ve witnessed with you and Emma.
Every time I bring Emma for her lessons with Kathy, I know that in the days to come after her lessons,  I will be witness  to some great gift.. It could be Emma’s movement, her speech, or maybe her vision.  One never knows.  But it’s inevitable and that’s what’s so great about ABM.  Last week’s lessons not only helped Emma, but my wife as well.  You and Kathy have given my wife the most beautiful gift any human can give another: HOPE.  I can only express my thanks and hope you know how much of a difference you have made in my family’s lives.

LOVE AND LIGHT,   David Zupko

4 Responses

  1. Acid reflux can ruin a whole day!

  2. hi mr. zupko,
    I wanted to get in touch with you because my 7month old was diagnosed with fryn’s syndrome. This syndrome is soooooo rare that I have not found one person with a living fryn’s syndrome child until I found Emma. Please write to me. Would love to talk to you and your wife.

  3. My daughter has now lost two beautiful girls to Fryn’s, the only surviving child has the possibility of being a carrier. She is still deciding whether to try again or adopt, since the chances of her having two children with this syndrome were extremely rare, she is concerned that she and her husband are the anomaly. Anyway just checking to see if there was any news about genetic work that might work around the recessive gene – good luck to you!

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