Today’s Honoree is Steve Walfish

Steve Walfish has three children, two boys ages 16 and 17 years and a 21 year-old daughter, Emily. Emily never walked or talked. She is not toilet-trained, cannot self-feed, and is totally dependent. She has Rett Syndrome, a neurological disorder that to date has occurred only in females. Development is normal up to about six to eighteen months of age. A period of stagnation or regression follows, during which the child loses purposeful use of the hands, replacing it with repetitive hand movements which become almost constant while awake.

Rett Syndrome (now called Rett Disorder) causes severe mental retardation and physical handicap. There is no known cause, treatment or cure. Emily’s mother abandoned the family leaving my brother with three children to care for. He has worked two full-time jobs and been the primary parent to all three kids.

 

This entry was posted in Uncategorized and tagged , , , , , , . Bookmark the permalink.

4 Responses to Today’s Honoree is Steve Walfish

  1. jameswestgate says:

    Hi. My daughter has Rett. She is 3 1/2 years old. I think your brother must have done an amazing job because some days both my wife and I struggle with our two kids and Rett.

    Just like to clarify a few points here.

    1. Can you site where Rett Syndrome is now being called Rett Disorder – I like the name change!
    2. The cause is actually now fairly well understood. In about 95% of cases it is caused by random mutation of the mecp2 gene (ie not inherited) which causes a lack of the mecp2 protein which affects the way the brain works.
    3. Cure – Rett has been reversed in mice – even mice with late stages of the disease. Previously it was thought that the physical structure of the brain was affected, but this is not the case. Scientists are very confident that they will soon be able to restore the brain to good working order even in cases such as your nieces – amazing stuff.

    If you have any more questions please visit http://www.rsrt.org or contact me directly. Best wishes, James

  2. Hi James. I am Dr. Fran Walfish, Steve’s sister and Auntie Fran to Emily and her wonderful brothers. Indeed, my brother has done an amazing job as father and primary parent! My heartfelt best wishes are with you and your wife and family. Here are my responses to your comments:

    1. Rett Syndrome was changed to Rett Disorder in the Diagnostic and Statistical Manual of Mental Disorders Fourth Edition 1994 (DSM-IV) as a Classification. The DSM IV is a tool used by the American Psychiatric Association for professional diagnosing mental disorders and submitting/recouping fees for services from insurance companies. Rett’s Disorder (299.80) is categorized under Pervasive Developmental Disorders under the umbrella of childhood disorders.

    2. Scientific breakthroughs are abundant with Rett, and semantically it is arguable that while we now know the source of Rett to be the mutation of the gene, it is not known what causes the mutation.

    3. James, I am an optimist. Sounds like you are, too! Currently, there is no know cure for Rett. I wish, hope and pray that there will be one day soon. Emily’s case is severe. She suffered a bout of life-threatening pneumonia which left her with a tracheotomy and feeding tube. These are sadly irreversible. My brother has been exemplary in sacrificing himself for round-the-clock home nursing care. Prayers that your daughter has a milder case of Rett and a brighter future. I am a child and family psychotherapist, not an M.D. who specializes in Rett Disorder. This article focuses on the “honoree”,STEVE WALFISH, not Rett Syndrome.

    All best wishes,
    Fran

  3. Hi there
    Im a Rett parent as well and I just wanted to share that I believe Rett’s Disorder to be outdated terminology. It is always referred to as Rett syndrome by experts in the field. Oh, and it does happen in boys-rarely-but it does happen. Another great site for info is http://www.rettyndrome.org.
    congrats to Steve for his honor-he certainly deserves to be recognized! Living with Rett syndrome is tough! But there is so much hope!

  4. Hi Erica,
    I’m very pleased to hear that Rett’s Syndrome is still the terminology used by experts in the field. It was changed a number of years ago in the DSM IV. The fifth edition, DSM V is currently being edited and will be published soon. I hope they continue to identity Rett’s as a “syndrome” since the symptoms emerge as a cluster which is a syndrome.

    I have never heard of Rett’s Syndrome being diagnosed in boys. I have seen a number of boys who appear to have Rett’s but indeed have a different diagnosis.

    Thanks for your kind words about my brother, Steve, and his well-deserved honor! So glad you are filled with hope and a bright optimism.

    All best wishes,

    Dr. Fran Walfish

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s