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Single dad fights to understand daughter’s mystery illness

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RUTHERFORD, New Jersey (PIX11) – Alex Dwek’s greatest joy is also his greatest despair.  His beautiful 7-year-old daughter, Maya-Rose.

When she was an infant, Alex and his wife noticed that Maya wasn’t sitting properly. Her legs were crooked.  Today, she can’t walk by herself, can’t talk and her illness can’t be explained. It’s a mystery even though Alex has taken her to many experts.

They’ve ruled out autism, Dwek says, “And CP. They’ve ruled out everything. One muscle biopsy, no, two muscle biopsies. A spinal tap she’s had. All negative. Everything was negative. Two MRI’s. Negative completely.”

Maya verbalizes with shrieks and squeals. And she can understand people who talk to her. She lights up when asked to give a smile.

Mystery Illness

Alex, a speech communication professional who lives in Rutherford, NJ, is struggling to care for his daughter and pay the bills as the emotional and financial tolls are everpresent.

“Financials are difficult because I can’t see all of my clients…It is difficult financially because I have to change my life around picking her up and paying people to be here to watch her. And she still wears even diapers.”

Dwek is asking everyone to watch the video in hopes of finding anyone who has seen a similar case, and perhaps can help him find treatment. This one of the stories that video tells much better than words alone can.

Alex wants any suggestions. Someone may know the answer that can help his daughter.

If you have any idea what might be behind Maya’s symptoms, please email me at Howardshelpers@pix11.com.

See more of Help Me Howard on his website, click HERE.

23 comments

  • Guest

    I hope they get the help they need. If she had them, have the parents considered that this could potentially be a vaccine injury from one of the vaccines given at birth and exacerbated by any other vaccines given at a later time? I have a child on the Autism Spectrum who we know was the victim of vaccine injury. As you may know, parents can no longer sue for vaccine injury as per Bruesewitz vs. Wyeth, but if within the appropriate time frame, they can file a claim with NVICP. Most parents like myself were never told that we could file a claim by our children's pediatricians and our children's rights were denied.

    • NAtalie young

      Can someone see this young girl is tested at Igenex for Lyme disease Babesia Bartonella erlichia rickettsia

      And also mycoplasma fermentans
      And chlymidae pneumoniae

      My daughter Matilda rose age seven has neurological pain weakness with her
      Infections she contracted in utero

      Long term antibiotic treatment with ilads guidelines helping
      Infectious disease drs in USA are linked to chronic Lyme denial
      Ring ilads get a dr near you

  • Ellen Marie Donovan

    Have they done genetic testing my daughter was recently diagnosed with Rett syndrome and this beautiful little girl has similar characteristics….god bless her and her dad it is definitely not easy

  • Guest

    I shared this story with friends and they inquired whether or not Mr. Dweck had the 23 and Me test done or an OAT test?

  • Maria

    Assuming that genetic testing has been done, I would look at environmental allergies. Read the book, Is This Your Child?, by Dr. Doris Rapp. I would also look at the MTHFR gene mutation (MTHFR.net), a comprehensive nutritional test like, Genova Diagnositc ONE test and a Zinc/Copper serum test.

    As a person who didn't get my answers or needs met for my child, by the mainstream doctors, I highly encourage you to seek a qualified environmental, holistic or MAPS doctor http://www.medmaps.org/ to help you find the answers you are looking for.

    Best of luck in getting your beautiful daughter the help she needs.

  • guest

    John Fink a neurologist at the University of Michigan might be the guy to send this to. He diagnosed a child with a rare genetic disorder called dopa-responsive dystonia (DRD) – a movement order caused by a deficiency in the neurotransmitter dopamine. Child was given Levodopa and later added (5-HTP) a serotonin precursor.

  • Guest

    There is a young girl with an illness called Nemaline Myopathy. This disease presents differently in each person but I see similarities. Her illness was not diagnosed for quite some time. It takes the right doctor to order the correct test to be performed in the proper context and sequence. The website below may provide you with some insight but I encourage you to seek out a neurologist who is willing to go the extra mile in research. Dr. Szperka has worked out of Children's Hospital in Philadelphia and she also works through Thomas Jefferson. She may be able to assist you as she provides scholarly research to find answers in a compassionate manner. I pray you find answers as I know they are out there .http://www.ninds.nih.gov/disorders/myopathy_congenital/myopathy_congenital.htm

  • Guest

    Could she possibly have a 22q deletion syndrome, 22q13 or 22q11.2? She needs thorough genetic testing to provide a dx for this I believe.

  • Guest

    Stiff-legged toe-walking indicates gut pain, as does rocking back and forth. Consider at minimum removing gluten, corn and dairy from the diet and see if there is any improvement. Warning, kids can get addicted to gluten and dairy, so there may be 2-4 days of withdrawal symptoms when they get removed. It sounds crazy, but thousands of parents report this.

    FYI, sometimes a muscle biopsy is negative in one part of the body and positive in another. Sometimes it is negative one year and positive another. A muscle biopsy is not considered the gold standard of testing anymore by every geneticist or neurologist.

    Dr. Fran Kendall has been good at diagnosing the kids that other doctors have not been able to diagnose. So has Dr. Marvin Natowicz. Dr. Marvin Natowicz is with the Cleveland Clinic. Dr. Fran Kendall is independent and does not take insurance; you would need to file the claim yourself.

    Tests to consider if they have not already been done:

    1) Rule out hypothyroidism

    2) Do a 24 hr EEG to catch any sub-clinical seizure activity

    3) Rule out creatine deficiency disorders, recently discovered — the expert in them is Dr. Joseph Clark, who has a FaceBook group, called the Creatine Deficiency Support Group. A normal MRI will not show this. The brain creatine needs to be scanned. There are also blood and urine screening tests. 24 hour urine creatinine (has to be 24 hour) may be a good initial screening test. It can be done through Quest or LabCorp or other in-network lab.

    4) If testing turns up nothing — do a therapeutic trial of the mito cocktail, anyway, if it has not already been tried.
    At a minumum, try:
    Carnitine (rx levocarnitine is best)
    CoQ10 (Q-Gels are one of the most bio-available forms)
    Introduce one at a time and start with a small amount. Work up slowly to a dose of 50 mg per kg daily of carnitine, divided into three daily doses. For CoQ10, the dose is a minimum of 10 mg per kg daily if it is ubiquinone. Ubiquinol is five times more bio-available, so the dose can be lower in that form.

    More about mito cockail and doses:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC35614

  • Guest

    Is there anything in the environment that could be causing this? Toxic black mold in the home? Has the well water been tested? For uranium? Hydrogen sulphide gas can sometimes poison a home if it builds up in the well water from sulphur reducing bacteria, usually also present with iron reducing bacteria. Usually the iron would also be high in the water. A faint rotten egg smell would be most likely present at least sometimes. Has the basement been tested for radon? Maybe the county health dept could be contacted to see if there is any free or low cost testing available for any potential environmental exposures.

  • Shelly

    I wish I had some idea of what they could look into, but I wondered why autism was ruled out. Both of my sons have mild autism, but I know several other parents who's children have more severe autism and they have many of the same behaviors. The only thing they don't have is the problem with walking. It could be the walking is unrelated to the other symptoms. I hope someone is able to help!

    • Sherry Selfe

      Have you contacted U.R. Our Hope? They are a fantastic program assisting and giving voice to those who are undiagnosed. They helped us get a diagnosis for our children.

  • Corinne

    Her symptoms seem similar to a child I worked with who hat retts syndrome. Has this been ruled out yet? I hope you get answers.

  • Gary

    Many of your daughter's symptoms could be an indication she has lyme disease. This is a treatable disease with antibiotics. Good luck finding a doctor who will even consider testing for it. Please have her see a Lyme Literate Medical Doctor to get tested for this.

    • guest

      Dr. Richard Horowitz is supposed to be an amazing diagnostician. I don't know if he will give a dx to a young child, but if anyone can tell if its Lyme, its him.

  • Rita Benigno-Herrera

    Batten disease is a rare genetic disease….my friends daughter who was suffering from seizures progressed worst with the similar symptoms….n was tested for everything until they finally found the answer.

Comments are closed.