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  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    1/8

    Spring   995 Volume 5• Issue Number  

    Who I m nd Who I m Becoming

    By: JOHANNA WARD

    A

    Leforte 1 is a max

    illary advancement

    which corrected the

    ahgnment of my upper jaw.

    My upper jaw was de

    pressed about twelve milli

    meters and, as a result, I

    had an underbite. This was

    the part of my face which I

    hated because, to me, it was

    the ugly part. But as time

    slipped away and the opera

    tion approached I became

    more

    and

    more scared.

    t

    was not simply pre-surgery

    jitters; it was a powerful

    and irrational fear

    that ex-

    tended into other

    areas

    of

    my

    life not related to the

    op-

    eration.

    t had

    only

    been

    less

    than twenty-four hours

    since I had undergone a

    Leforte 1 with a bone graft

    when I saw myself

    in

    the

    mirror in the hospital bath

    room. I did not recognize my

    swollen face. The reflection

    surprised me, despite the

    fact

    that

    I knew I was going

    to look strange. I was told

    that

    over the next twenty

    four hours the

    swelling

    would get worse.

    t

    did. I

    crept up my face

    tojust

    be

    low my eyes. My entire face

    turned a yellowish hue.

    My

    lower jaw on either side of

    my chin lost its roundness

    and took on an

    angular

    form. t

    did not look like me.

    My hip

    hurt

    from where

    they took the bone. I drooled

    uncontrollably. I could not

    sleep comfortable. I could

    not talk. I communicated

    through

    my

    own version of

    sign

    language and

    eye

    movements, which I mostly

    rolled when someone did not

    understand that my tugging

    on my blanket

    meant

    that

    I

    was cold and that I wanted

    another one.

    But this was all part of

    the

    deal. Two

    operations

    and some orthodontic work

    and my facial abnormalities

    which were the result of a

    cleft lip and palate would be

    gone. More important I

    would be able to rejoice in

    the knowledge that I had

    done everything within my

    power and within the

    boundaries of medical sci

    ence to correct what

    was

    wrong.

    But

    the promise of sur

    gical correction was great

    enough

    to

    help

    me go

    through with it and to be

    excited about it.

    The Fall after that op

    eration, I returned to school

    to start my junior year at

    college. While I was pleased

    with my appearance I could

    not shake the fear

    that

    in

    vaded my thoughts. In ad

    dition, another vague ach

    ing began to accompany my

    anxiety.

    Through some profes

    sional guidance, I discov

    ered that the ache was sad

    ness, a profound sadness

    and sense ofloss which re

    sulted

    from losing my

    underbite. This experience

    helped me to realize the de

    gree to which my underbite

    and my face significantly

    contributed

    to how I

    thought about myself and

    how

    I perceived others felt

    about me. I had become a

    part of me, a part of who I

    was. I discovered that the

    strange

    persistent fear

    stemmed from not knowing

    how to feel about myselfand

    not being able to conceptu

    alize how others felt about

    me without my underbite.

    As a result, I was afraid to

    be around people because I

    no longer knew how to in

    teract with them.

    So

    I had

    to

    learn.

    And I

    am

    still

    learning. In a way, I have

    slowly been reinventing my

    self guided only be the fact

    that I

    am

    acutely aware

    that I

    must do

    it.

    I believed, with all of

    my

    heart that

    this process

    would finally peel the label

    of birth defect

    that

    I had

    &lways put upon myself.

    But I discovered that no sur

    gery was going to remove

    that

    label. Since I had put

    it on, I would have to

    take

    it off.

    I once believed that sur

    gery would fix it all. But

    now I understand that for

    me, no physical

    change

    could have occurred without

    an emotional one. I was not

    expecting this.

    But

    the emo

     

    ut the

    emotional

    aspect

    of my experi-

    ence showed me how

    much my birth defect

    has

    become a

    part

    of

    me I came to under-

    stand

    that

    my

    face not

    only

    determined how

    I thought

    others per·

    ceived me but also

    how I

    viewed

    others

    It has

    contributed

    to

    how I see the

    world

    and what

    I

    think is

    important

    in

    my

    life

    tional aspect of

    my

    experi

    ence showed me how much

    my birth defect has become

    a part of me. I came to un

    derstand

    that

    my face not

    only determined how I

    thought others perceived

    me but also how I viewed

    others.

    t

    has contributed to

    how I see the world and

    what

    I think is important in

    my life. Most of these con-

    siderations

    have tran

    scended

    the physical

    changes of surgery.

    For me it has never been

    a question

    of

    Why me? Why

    was I born this way? Why

    did I have to have surgery?

    Because ''it'' is me. is a pro

    found

    part

    of who I am. I

    once thought I could surgi

    cally separate

    my

    cleft pal

    ate

    from me. But instead I

    have opened myself up to

    fully accept i t as a part of

    who I am and who I am

    be-

    coming.

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    2/8

      fForward Face

    A

    Newsletter For

    Patients Families With

    Craniofacial Disorders

    Spring

    1995

    Vol. 5 Issue Number 1

    Board

    ofDirectors:

    Betsy Old - President

    Susan Friedman

    Vice

    President

    Linda Bonventre .

    Treasurer

    Barbara

    Robertson· Secretary

    Patricia Chibbaro

    RN MS

    Administrative Coordinator

    Trudy S. Attenberg

    .

    Editor

    David Attenberg .

    Assoc. Editor

    Nancy Bartlett

    Joseph Bonventre

    Roxane DiVuolo

    Elaine Gilbert

    Barbara King

    Steve King

    Margy Maroutsis

    Jodie Morrow

    Advisory Board:

    Betty Bednar

    Diana Cassidy

    Caren Crane

    Hope Charkins Drazin M.S. W

    David Drazin Ph.D.

    Patricia Flanagan M.S.W

    Lorraine Gibbons

    Tony Gibbons

    Jack Gross

    Gisela Joseph

    Joan Robertson

    Caroline Rubino R.N.

    Cathy Sharkey Sarubbi

    Edith Schneider

    Audrey Sosis

    Tina Steinbeck

    Robert Surles

    Charles Thorne M.D.

    Pam Tower

    Carol Wolff

    Page

    2

    ll of us at Forward

    Face

    wish our

    children

    and

    families a very

    happy and

    healthy

    1995. We

    look

    forward

    to

    continuing

    our

    partnership

    in

    offering our chil-

    dren the most comprehensive support services possible.

    We

    are dedi-

    cated

    to

    continuing our quest

    to

    helping each child attain a strong

    sense

    of

    personal value

    and self

    worth.

    Forward

    Face Networking Services

     

    Forward Face Networking Services are available

    to

    all

    families

    that

    are interested in speaking with another person

    who

    has gone

    through

    similar

    experiences and circumstances.

    Those

    interested

    in becoming a networking parent are urged to call

    Forward

    Face

    at

    1-800-422-FACE or 212-684-5860.

    Cleft Lip Palate-NY

    Debbie Bottiglieri

    (516) 689·9235

    Edith

    Schneider

    (718) 837·7320

    Veronica

    OOOr

    (914) 947-4008

    NJ

    Debbie

    Smith

    (908) 364-3384

    CT

    Cathy Joyce

    (203) 325·9766

    Moebius Syndrome-CA

    Vicki McCarrell

    (818) 908·9288

    Craniofacial Synostosis

      Y

    Nancy Bartlett

    (516) 795·2609

    NJ

    Pam

    Tower

    (908) 964·7726

    Forward Face

    is an organiza-

    tion

    for

    patients

    and families

    with

    craniofacial disorders. For

    ward Face was formed in 1978

    and

    incorporated

    in 1980 as a

    non-profit

    organization.

    Forward Face

    and

    this

    publication rely solely on the

    generosity

    of

    others.

    For More Information:

    Further information about For

    ward

    Face and

    its

    support pro·

    grams

    can

    be obtained by writ-

    ing

    to:

    Forward Face Inc. • 317

    East 34th

    Street

    • New York, NY

    10016 or you

    may

    call 1-800-422

    FACE or 212-684·5860.

    CT

    Trudy

    Attenberg

    (203) 374-8199

    Craniofacial

    Microsomia-VT

    Mary Baldwin

    (802) 482-3481

    Hemifacial

    Microsomia-NY

    Linda/Joe Bonventre

    (516) 798-2271

    NJ

    Barbara Robertson

    (914) 245·6121

    Treacher Collins

    Jamie Anton

    (814) 455-5857

    Emily Lustine

    (215) 487·2360

    PA

    Jamie

    Anton

    (814) 455·5857

    Emily

    Lustine

    (215) 487·2360

    The Forward Face Newsletter

    is

    published

    by

    Forward

    Face,

    Inc.

    The subscription/member-

    ship rate is $20.00 per year . Your

    check should

    be made

    payable

    to

    Forward Face, Inc.

    11111111

    Letters To

    The Editor:

    We welcome and ecnourage

    you to

    submit

    any

    stories,

    expe

    riences, comments

    or

    sugges-

    tions

    that you might have.

    En-

    tries should include: your name,

    address and phone

    number.

    Di-

    Apert Syndrome-NY

    Corey Torres

    (718) 271·5499

    Orbital

    Hypertelorism-NY

    Nancy Bartlett

    (516) 795·2609

    MI

    Gloria Verdi

    (313) 855·3474

    Microtia Atresia-CT

    Carol

    &

    Paul Wolff

    (203) 322·6405

    Liz

    Keenan

    (203) 521-5623

    NJ

    Betsy Old

    (201) 761·5438

    Hemangioma-CT

    Pam

    Wiker

    (203) 972·3043

    rect all written correspondence

    to:

    The Forward Face

    Newslet

    ter,

    317

    East 34th

    Street,

    New

    York, NY 10016. You may also

    submit correspondence by fax

    212-684·5864.

    The Forward Face

    Newsletter

    reserves

    the right

    to edit all

    sub·

    missions. Articles may be re -

    printed with permission.

    ©

    1994 FORWARD

    FACE

    Forward Face, Inc.

    317 East 34th Street

    New York, Y 10016

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    3/8

    James Brown • The Hope

    nd

    Love Continues

    By: LIZ BROWN, Belfast,

    Ireland

    were malformed and the nutrition.

    set

    off.

    To say we were made

    lower

    half

    of his face was James spent six weeks in welcome would be an under

    the 16th

    of

    March 1992, after

    a normal, healthy

    pregnancy and a straightfor

    ward labour and

    delivery

    lasting

    just

    five

    and

    a

    half

    hours

    from

    start to

    finish,

    our second son,

    James

    was

    born. At first sight, looking

    at

    the top of his dark, curly

    n

    head he looked exactly like

    his big brother, Robert. t

    rapidly became clear though

    from the expression on the

    face of the obstetrician who

    delivered him,

    and

    from

    the

    sudden

    burst

    of activity in

    the

    room that

    something

    was wrong.

    Initially we were told he

    had a cleft palate. Although

    we

    were

    shocked

    we had

    heard

    of

    this

    condition

    and

    knew i t could be

    rapaired.

    The

    doctor

    then said that

    James was having breathing

    difficulties and

    that it

    would

    be

    best

    if

    he was taken

    to

    I.C.U.

    right

    away. The nurse

    brought him over wrapped

    in his blue blanket for a hug

    and a kiss and we then real

    ized he had a lot more wrong

    than just a cleft palate. His

    colour was dusky,

    his

    ears

    Page

    3

    small

    and

    sunken in. Deeply

    shocked we kissed him and

    he was whisked away.

    We

    felt as

    if

    our whole world had

    turned upside down.

    We

    were fortunate

    that

    within an hour or two the

    hospital had identified

    James' condition - Treacher

    Collins Syndrome.

    For

    those

    of you not familiar with

    T.C.S.

    i t

    is basically a mal

    formation of the bones of the

    face.

    In

    James' case this led

    to malformed outer ears, a

    very small lower jaw, miss

    ing cheekbones and a cleft

    palate.

    Within

    hours

    of

    his

    birth James

    had

    to be

    put

    on

    a ventilator to

    assist

    his

    breathing and two days later

    he

    had

    a tracheotomy. We

    were

    left in

    no

    doubt

    that

    this

    was

    not

    a

    matter

    for

    debate

    but

    an absolute es

    sential. James' other prob

    lem was, and is, feeding. He

    never managed more

    than

    an ounce from a bottle

    and

    the

    energy

    he expended in

    trying

    to

    suck

    was a

    sad

    sight to see.

    t

    became clear

    that he

    would

    have

    to

    be

    fed

    by

    naso-gastric

    tube

    to en

    sure he received adequate

    the

    Neo-natal

    Unit at

    Belfast City Hospital as we

    learned to handle his tube

    feeds and care for his trach

    and

    began to organize our

    home to accommodate

    the

    medical

    equipment which

    is

    an

    essential part of

    life for

    James. During this time

    James sawall the

    top doc

    tors

    in

    Northern Ireland in

    the

    fields of

    Audiology,

    KN.T., Plastic Surgery, etc.

    His health was stable and

    though we were

    by

    no means

    sure

    what

    the

    future held, at

    the

    age

    of

    six weeks and one

    day,

    James

    came home His

    brother

    was just

    over

    two

    years

    old

    himself

    at

    that

    time

    but

    he accepted James

    undoncitionally

    and

    loves

    him dearly. If he has every

    beenjealous of

    the attention

    his

    brother

    receives,

    he

    has

    never

    shown

    it.

    Although James

    was

    seen by the best doctors

    in

    Northern Ireland,

    in

    a coun

    try with a population of only

    11/2

    million, conditions like

    T.C.S. are not

    seen

    all

    that

    often

    and

    we

    were desperate

    to

    ensure

    that

    everything

    that needed to be done form

    him

    was being

    done. We

    were in the fortunate posi

    tion of

    having

    connections

    in

    America

    in

    the form

    of my

    brother and his family, and

    of course from the moment

    they

    heard

    of

    James' birth

    and

    his condition, they

    worked hard on ourbehalf to

    find

    out

    as much as

    they

    could about the syndrome

    and

    its

    treatment.

    Through

    them

    the

    contact with

    For

    ward Face was established

    and,

    in July

    1992, we re

    ceived a

    letter

    from Betsy

    Old offering us the opportu

    nity

    to bring James across

    the Atlantic to N.Y.U. to be

    assessed by Dr. McCarthy

    and his team We

    had

    no

    hesitation in accepting and,

    in October 1992

    after

    many

    letters and phone

    calls

    we

    statement

    During this visit

    we also had the

    chance

    to

    meet

    two

    other

    families who

    had children with

    T.e.S.

    This

    was in-

    valuable

    to

    us

    - it

    was

    great

    to meet

    other

    people

    in

    the

    sameposition as our-

    selves

    and helped

    l ss n our f lings of

    isolation.

    We attended the cranio

    facial conference and James

    was also seen by a Pediatri

    cian and an

    Audiologist. Dr.

    McCarthy was generous

    with his time and advice

    and

    we left

    NYU.

    feeling reas

    sured

    that

    there was a lot

    that could be done for him.

    On our return home James'

    method of feeding was

    changed

    to a

    G-tube and,

    thanks to Betsy's hand-made

    headband, he was now wear

    ing his hearing aid full time.

    The importance of this was

    stressed to us lould and clear

    by

    everyone

    we

    came into

    contact

    with

    in New

    York

    One

    of the things

    Dr.

    McCarthy mentioned during

    ou r visit was

    that

    James was

    a

    potential candidate

    for

    "Mandibular

    Bone

    Expan

    sion"

    when he

    was

    around

    two years old. This proce

    dure

    to

    lengthen the

    lower

    jaw is usually used when the

    child

    has major

    breathing/

    feeding problems.

    We

    read

    all

    the

    information which

    was available about it, then

    mentally filed it away for

    future

    reference.

    At

    that

    time, although we were still

    in contact with

    Forward

    Face, we

    didn't

    know

    if

    we

    would

    have

    the opportunity

    to go back to New York.

    Continued on

    next

    page)

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    4/8

    James

    Brown

    ontinued

    s time went by we men

    tioned

    this

    procedure to our

    doctors here in Belfast. They

    had heard of it and were very

    interested

    in

    its

    potential

    but

    told us

    it had

    never been

    done in Northern Ireland.

    James second birthday

    came

    and went and the trach

    and the G-tube were still

    in

    place. Then I read

    an

    article

    by Barb Schinderle telling

    the story of

    her daughter

    Megan's successful bone ex

    pansion. This really

    got

    us

    thinking

    again of the ben-

    efits it could

    have

    for James.

    We approached

    our

    doctors

    here once again

    and eventu-

    ally found a surgeon willing

    to do the operation, although

    James

    would be his first at-

    tempt at

    using

    this proce

    dure on the lower jaw. Al

    though we were

    apprehen-

    sive, we felt this was James

    best chance for progress. We

    were in the process

    of

    setting

    it all up when,

    out

    of the

    blue, we had a letter from

    Pat

    Chibbaro saying

    that

    Dr.

    McCarthy would be

    happy

    to

    perform

    the

    bone

    expansion

    procedure and

    that James

    had

    been accepted on

    the

    FACE LIFE program by

    the

    N.F.F.R. which would

    help

    with

    our expenses. We

    were

    absolutely

    amazed and of

    course

    delighted that

    once

    again our

    American

    friends

    had come to the rescue Our

    decision

    was

    easily

    made.

    We

    knew that

    Dr. McCarthy

    had

    performed

    this

    opera-

    tion many times

    and,

    from

    our first meeting with him

    in 1992, we had a great deal

    of respect for him and

    trust

    in him

    and

    his team. Pat can

    testify to

    the

    series of excited

    phone calls which took place

    over the next few days.

    Thanks to Pat s magnificent

    organizational skills

    at

    the

    Institute and the

    support

    of

    them and application of

    an

    antibiotic cream to

    prevent

    infection.

    We

    stayed in

    America for two weeks

    after

    the

    surgery staying between

    the Forward Face apartment

    and

    my

    brother s home in

    Philadelphia.

    Then

    on the

    3rd of November, after a

    fi-

    nal check up, Dr. McCarthy

    the N.F.F.R. it wasn t long . agreed we could fly home.

    before our

    plans

    were in

    place and, on

    the

    14th of

    October, we arrived once

    again in New York.

    We

    attended the Cranio

    facial

    Conference and

    Dr.

    McCarthy

    assured us

    it was

    all systems

    go

    for the surgery

    to proceed. So, on

    Thursday

    the

    20th

    of October, James

    "pins" were put in place. The

    operation ws straightforward

    and the

    next

    day James was

    able

    to leave the hospital,

    much to his reliefl During his

    stay he scolded everyone who

    came into contact with him

    In

    face, to

    our

    great

    embar

    rassment, his nickname "the

    fighting Iri shman." After five

    days Dr. McCarthy turned

    the

    pins for

    the

    first time to

    start

    moving the jaw

    for

    ward. James

    naturally

    pro

    tested loudly Our daily rou

    tine was then established

    morning

    and

    evening

    one

    turn of the pins followed by

    cleaning

    of the

    area around

    Once home

    James

    was moni

    tored on a weekly basis by a

    local surgeon and he and Dr.

    McCarthy kept in touch by

    phone

    to check on

    his

    progress. After five weeks of

    turning and with a total of

    approximately

    27

    mms.

    achieved,

    the turning

    was

    complete. The next

    stage

    was

    to

    let

    the pins sit in place for

    8 weeks to let the new bone

    form

    and

    become solid in the

    space created by

    the

    pins. As

    I write, we

    are preparing

    for

    a return to New York for re

    moval

    of

    the

    pins

    by Dr.

    McCarthy at the start ofFeb

    ruary.

    t has been a

    challenging

    few months for our family

    but

    James, as always, coped

    magnificently. He

    proudly

    shows his "pins" and his

    new

    chin

    to

    anyone

    who shows

    any interest and indeed the

    change to his chin

    and

    lower

    jaw is quite substantial. We

    are

    delighted

    with the result

    and our

    hope now is that

    once James palate repair is

    complete we will

    start

    to see

    progress with his

    feeding

    and

    that

    eventually

    his trach

    and G-tube will no

    longer

    be

    necessary. Those of

    you

    whose children has been in

    this situation will appreciate

    what a difference this would

    make to all our lives.

    The

    support we

    have

    re

    ceived from family and

    friends has been of inesti-

    mable value and can never

    be repaid. Fortunately for us

    this

    support has extended

    to

    the U.S.A.

    and

    here we

    learned the

    importance of

    networking and

    communi

    cating. We never cease to be

    amazed how

    much

    people

    are prepared to do for com

    parative strangers. The sup

    port we have received both

    practical and emotional, has

    been vitally

    important

    and,

    far

    from feeling like

    strang-

    ers, we now feel

    part

    ofa spe

    cial team.

    That

    team

    has

    the

    interests of many people

    at

    heart, and for that what can

    we

    say

    but THANKS

    Anyone who has

    a

    child with a birth de-

    fect will

    know

    that

    life can be tough

    n

    the

    past

    few

    years we

    have

    learned a lot

    about medical proce-

    dures but more impor-

    tantly

    we

    have

    learned

    the value of

    friends

    With the continuing support

    of

    Forward

    Face

    and the

    N.F.F.R. we look forward to

    a bright

    and happy

    future

    for

    our son.

    JAMES

    UPDATE

    In

    February

    of

    1995,

    James

    and

    his mother

    Liz

    returned

    t New

    York.

    Dr.

    McCarthy

    removed

    the Bone

    Expander

    and

    repaired J

    ame s

    cleftpal-

    ate. When JamesandLiz

    returned to Ireland a few

    weeks later the trach was

    removed. On March 17

    James

    celebrated his 3rd

    birthday.

    Page 4

    (Continued from Page

    3

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    5/8

    Inner

    Faces

    -

    A support group for young adults

    Inner Faces is

    proud

    to

    introduce a column featur-

    ing questions and answers

    which will now

    appear in

    each Forward Face newslet-

    ter. Inner Faces

    is

    a support

    group sponsored by

    Forward

    Face to serve teenagers and

    young adults with craniofa-

    cial disorders. The Inner

    Faces

    group is New

    York

    Citybased,

    bu t

    would like to

    network with

    teens and

    young

    adults

    from all over.

    An important activity

    that

    Inner Faces

    has

    created

    is a forum for all group mem-

    bers

    to meet for a

    Rap

    &

    Lunch." A

    rap

    session con-

    sists ofall members meeting

    at someone's house

    to

    openly

    talk about issues over lunch.

    Recently, we rapped

    about

    dating, which sparked many

    different issues. At the end of

    the rap session

    the

    question

    printed below was passed out

    to everybody. They

    were

    asked to

    take

    the question

    home and answer

    it

    confiden-

    tially. e will print

    names

    only

    if

    specified. Please sub-

    mit your answers to:

    Inner Faces Questions

    &

    Answers

    do

    Alyssa Morganlander

    227 Columbus Drive

    Jersey City,

    NJ

    07302 #103B

    Inner

    Faces looks forward

    to

    hearing

    from you soon

    Please keep

    in

    mind that we

    only

    have

    enough space to

    print

    some of

    the

    responses.

    Also, if you have

    an

    idea for

    a question

    or

    just some

    thoughts to share, please feel

    free to do so by sending your

    letters

    to

    the

    above address.

    QUESTION...

    s a young adult I'm trying

    to

    put behind

    all

    the

    insecu-

    rities

    that

    past experiences

    of looking

    different have

    brought me. The one area I

    have

    the hardest

    problem

    with

    is

    meeting guys/girls.

    How do I get

    past

    my face

    and feel comfortable enough

    to

    let

    someone get to know

    me?

    ANSWER#

    My

    face has never been an

    obstacle

    when it

    comes

    to

    forming

    relationships. How-

    ever, moving from personal

    intimacy

    to

    physical

    inti-

    macy has always been

    troublesome.

    Somehow

    I felt

    that all that

    was

    visible

    was

    my

    face

    and that

    I needed to

    reject them before I

    was

    -

    jected.

    My

    disability in its ob-

    servable form may be facial

    but inside are the real scars

    and

    fears. I work on myemo-

    tional paralysis and

    try

    to

    view myselfdifferently, but it

    is

    hard.

    It is

    the

    hardest. type

    of

    risk

    that

    I face. Most ofall,

    I need to stop seeing myself

    as

    I

    imagine

    others

    do.

    THAT is a no

    win

    situation.

    NSWER 2

    One

    way

    is to let them

    have

    the clinica l low down on

    your

    condition i.e. I was

    born

    with a congenital disease

    that caused some facial dis-

    figurement. This strips

    away

    any mystery and igno-

    rance

    that

    often leads to a

    question like were you in an

    accident?

    Then

    I

    would

    try

    Spring

    Educational Meeting

    to be

    myself

    and charm the

    socks offa

    memberof

    the fair

    sex. I think,

    more

    impor-

    tantly, one

    has

    to be comfort-

    able with his  

    her

    own situ-

    ation

    before

    allowing

    some·

    one inside.

    This

    is easy to say

    and maybe

    with

    the support

    offriends and family, (and

    a

    psychologist   need be) it can

    be done.

    n

    many ways

    my

    shyness and

    appre-

    hension

    have built

    up inside ofme

    and

    now

    it

    is this

    great

    wall to

    climb

    over. I

    struggle

    and seek

    out insights from

    people that I

    trust.

    I

    need not to see

    my

    entire

    body

    as

    dis-

    abled.

    I need not

    single

    myselfout as

    incapable

    of

    giving

    and sharing

    in

    a -

    mantic way

    On Sunday,April 2, Forward

    Face

    hosted its Educational

    Meeting

    featuring members

    of the

    team

    at the

    Insti

    tute

    of Reconstructive Plastic

    Surgery. Stimulating and

    very informative presenta

    tions were made

    by

    Dr.

    Jo-

    Page 5

    seph McCarthy on the

    use

    of

    the Bone Expander

    in

    Cran

    iofacial Reconstruction, Dr.

    John Seibert

    on Microvascu-

    lar

    Free Flap surgery,

    Dr.

    Barry

    Grayson on Cleft Lip

    and Palate repair, Dr. Paul

    Hammerschlag

    on Aural

    Atresia repair and

    Canalplasty, Dr. Lawrence

    Brecht on

    Ear

    Prosthetics

    and Ear

    Reconstruction.

    Elsa Reich, MS,

    the

    Genetic

    Counselor

    presented

    excit-

    ing

    new

    developments

    in

    ge-

    netic

    research in the

    field

    of

    Craniofacial Conditions.

    Families from

    the

    tristate

    area benefited from

    the doctors presentations

    while their children enjoyed

    the entertainment

    provided

    by

    Part

    Magic

    with

    Bob

    and

    Ferris.

    Our

    next

    Educational

    Meeting

    will

    be in the

    fall of 1995.

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    6/8

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    7/8

     

    The

    Face

    Facts

    Video

    Understanding Facial Disfigurement

    Face Facts narrated by CliffRobertson, is the first

    comprehensive set of video

    tapes

    focusing on facial

    disfigurement. All

    tapes have the same

    23-minute

    overview that features in-depth interviews with medi

    cal professionals,

    educators,

    family

    members,

    and

    patients.

    o Cleft Lip

    Palate

    o Craniosynostosis

    o Hemifacial Microsomia

    o Treacher Collins Syndrome

    o Orbital Hypertelorism

    o Complete

    Set

    Total Enclosed

    Name

    Address

    City

    Daytime

    Phone

    -

      -

      -

      -

      -

      -

      -

    State

    Each tape is highlighted by a concise segment fo-

    cusing on a particular disorder.

    Face Facts

    videos meet

    the

    concerns of a family facing one of these disorders.

    Face Facts is appropriate for new parents, medical

    professionals,

    educators

    and

    community

    organiza

    tions.

    Individual Video Price

    Complete Set Price

    Members 15.00

    Members 60.00

    Non-Members 20.00

    Non-Members 80.00

    Institutions

    25.00 Institutions 100.00

    To order your

    ace acts

    videos call: 1·8()()·422

    FACE (212) 684·5860 or fill out

    this

    form and mail

    it with

    your

    check or money order to:

    Forward Face

    317 East 34th Street

    New

    York,

    NY

    10016

    _

    _

    Zip _

    _

    The Bruce Morrow

    Children

    And Family Assistance

    Fund

    The Bruce Morrow Children and Family Assistance Fund (originally

    named the

    Forward

    Face

    Family

    Assistance Fund was

    established in

    the

    spring

    of 1990 by the Forward

    Face Board of

    Directors. The goal ofthis

    fund

    is to offer financial support

    to

    families for

    those

    expenses which are

    not

    covered by medical

    insurance. These

    expenses include: lodging or housing,

    food, transportation, medical

    equipment

    and other uncovered costs associ

    ated

    with

    surgical intervention.

    If you feel this

    fund may

    be helpful to you, or if you, a friend or family

    member

    would like to make a donation to this very worthwhile cause, please

    contact: Nancy

    Bartlett

    (516) 795-2609 or

    Pat

    Chibbaro (212) 263-5205.

    Donations

    may e made

    to:

    The Bruce Morrow Children and Family Assistance Fund

    Forward Face

    317 East 34th Street

    New York NY 10016

    Page

    7

  • 8/9/2019 Forward Face Newsletter 1995 Spring Vol 5 No 1

    8/8

    Becotne tnetnber ofForward Face

    Your support will help

    change

    how a child sees the world

    and how the world sees a

    child

    Name

    _

    Address _

    City

    State

      Zip _

    Daytime

    Phone

    _

    o Enclosed is my subscription/membership dues to Forward Face one year $20.00)

    o I would like to make an additional tax deductible

    donation

    of $ _

    Please make checks payable to Forward Face, Inc.

    end

    To

    Forward Face, Inc.

    317 East 34th

    Street

    New York,

    NY

    10016

    For

    further

    information on Forward Face

    and

    its support programs

    please call: 1·212·684·5820

    Forward Face

    317

    East 34th Street

    New

    York,

    Y

    10016

    Mr. Neil 1 Gillespie

    2400 20th Avenue

    NW 5o.  

    Olympia, WA 98502

    Page 8