Maxine's Page



MAXINE WESTERN REED

June 3, 1954-May 9, 2009

Maxine Bernice Western was born to William and Bernice Western in Stockton, Ca.  She was one of 3 siblings  (Sylvia, Travis & Maxine)  She lived in Stockton until age 7 and then San Jose for a few years before moving to Modesto.  She graduated from Byer High School in 1974 and became a teacher's aide for mentally retarded children for 10 years.  She and her husband Robert were married in 1984 and have a daughter Sarah Jenifer.  Maxine is survived by her husband Bob, daughter Sarah, sister Sylvia Rhynes, brother Travis Western, niece Jenifer Ruiz, and nephews Todd Rhynes, Sean Western, and Bret Western, 4 grand-nieces and 1 grand-nephew whom she loved dearly.

Maxine died at home after losing a 10 year battle with breast cancer.  She was one of the oldest living adults with Apert Syndrome and enjoyed yearly get-togethers with the families of Apert children in Myrtle Beach, S.Carolina.  Maxine was a long-time member of the Grace Orthodox Presbyterian Church of Modesto and Sovereign Grace Church in Hughson.  She was also a member of Bible Study Fellowship International in Modesto.  There will be a graveside service at Ripon Cemetery at 12:30 Sat. May 16, followed by a memorial service at Zion United Reformed Church at 1200 Canal Blvd. Ripon, Ca. 95366.  There will be a reception following the service.  Memorials may be sent to Bible Study Fellowship, 19001 Huebner Rd. San Antonio Texas, 78258 or www.bsfinternational.org.

 

  I had the pleasure of meeting Max at the Salt Lake City CCA retreat. She and I had some nice long chats. She was so genuine and down to earth and so optimistic. My daughter, also with Apert...just LOVED her. I am so saddened to hear of her passing :( She was such an amazing Lady. I know she is up there in heaven..looking down on all of us as happy as can be.
Max you will be missed more than you could ever know. We Love you!!!!!!
Lisa and Ashley Bock
 
 
  oh my goodness this is so sad! max was a fighter for sure and always was so uplifting and had the best outlook on life, always reading her entries here on the listserv i always admired her courage and strength and her advise was always so helpful! my thoughts and prayers go out to her family!!! what an inspiration i will miss reading her entries to us families here on the listserv!!!! god bless. and max you will be missed! stacey mom to madison 3 aperts
 
 
  My heart hurts right now. To those who knew Max loved her. To those who didn't, you would have.

She was a very uplifting person. And sometimes, funny as all get out. She will be missed greatly.

May you rest in peace Max!

Judy Amerman
 

 
  I knew she wasn't doing too well, but I had no idea it was THIS bad. Maxine was one of the first people I met when I was 6. I definitely looked up to her. It was after meeting her that my mom knew I was going to be ok. I really wish I would've reached out to her more recently. But, I'm glad we had fun together in SLC.

Kelly Spadini
 

 
  Gosh, Cat, thanks for sharing this....I just got a lump in my throat and tears in my eyes, because I knew by the subject what it was. I'm so very sorry for this world's loss of an amazing woman. I had the privilege of meeting her in Salt Lake as well, and I was totally inspired by her outlook on life and her spunk. She told us so many times that she would fight, but that she was ready for whatever the Lord had in store for her. Max, I know you are up in Heaven watching over all of us and especially our little ones. I hope we can always keep your spirit with us and remember that as you said it "we Aperts can do anything we set our mind to do".

Cat, do you have an address you can email me so I can send a card to her family.

Thanks, Laurel Olivia's Mom 6 with Pfeiffer
 

 
  It is with a heavy heart and leaky eyes that I accept the news of Max. I was one of the blessed ones, I was able to meet Max in SLC. To those who had the priviledge, you know the how lucky you are. To those that didn't, let me tell you...she was an amazing gal, with spunk like you have never seen! It was by meeting Max, that I knew my nephew was going to be okay in life. She touched more people than she can ever imagine, and while things will never quite be the same here on earth without her, I know in my heart that every single Apert kid out there has an extra angel watching over them.

With deepest sympathy for the Reed household as well as our listserv family,

The Bairds from Kentucky.
 

 
  To Bob and Sarah:
Although our family has not met yours, we feel as though we knew you. Max's emails told us about how you were doing Sarah -- we feel as though you grew up amongst us! Bob, it was evident that Max had a lot of love for you and Sarah too. We were looking forward to meeting you all this summer at MB. I hope that you and Sarah still consider coming.

For our family, Max was an inspiration. It was through her and the other adults on the list that we knew our daughter was going to be okay and live a full life. I can't remember ever reading a complaining email from Max, even after she got cancer! What a legacy she has left behind! Through Max, I was able to allow Julia to grow and tackle things like snowboarding. When others thought we were crazy, all I had to do was remember Max saying, "we aperts can do anything we want". I can't imagine the pain and loss you feel now but know that your wife and mother will always remain a person that our family will be grateful for having in our lives -- truly, she was a very special human being. I must agree with many others, that Max is an angel and I can envision her having a great party in Heaven!

I hope you feel our prayers with you,
Rene, Richard, Jenn and Julia
from Canada
 

 
  Maxine gave our family all the hope and information we needed ten years ago. She not only took the time with me, but my mother as well. I have in a photo album a beautiful picture of her ten years ago, and one as a child she sent us. I will cherish those.

Lisa Guyette
 

 
  Max was an amazing woman with a big kind heart, strong spirit; one who was fun-loving and definately a fighter. She was also an inspiration.
I've known her for ten years just about. She started as a friend, but like other apert adults, become my sister. She was the one that really prepared me for my midface surgery.

Apert Syndrome never slowed this lady done. Her motto was "We Aperts Can do anything and everything", and man did she live by that. If you have met her either in Salt Lake or Myrtle Beach, you know what I mean. Even after dealing with chemo, she'd still be yapping on the phone and wanna know how you were, and not talk about her. When she did, she would always sound so optimistic and give you the feeling like don't worry, I'll be around.

The last I talked to her was on the phone last week. Her voice sounded strong. We talked about my work, her husband, life. When I asked how she was, she said she cant do the things she used to. I asked her if the docs told her how long she had, and she would say no, or would change the subject. It was just her nature to not let others worry about her. That was just how she was. She cared about and loved her apert buddies, and didn't want others to worry about her. A few months ago, prior to her father passing, she talked about coming to Myrtle Beach this year with her husband and daugther, and how we'll have a blast.

My heart goes out to Bob and Sarah.

Max girlfriend, thank you for being who you are, i'll miss you. I'm sad you are no longer with us, but know your with her dad in a better place.

-Andrea Gartner
 

 
  OH, Where to begin.....

Max was an inspiration to all who met her.

She would lend an ear or a shoulder and offer an encouraging word to anyone who needed it. She was always determined to prove she could do ANYTHING that anyone else could, and she did!

She was a fighter and a role model for us.

We enjoyed many hours with her & Bob on the beach.

Then there was the many laughs. She invented the Max crawl. Who can forget that? :P

I have many pictures of her & Court. They shared the same birthday. This June 3rd will not be the same.

I spoke with Bob a while ago. I won't share our conversation (as he may not want it published) but to say that he is holding together pretty well. Where ever you seen Max, there was Bob.

I guess heaven needed another angel and they received an angel that was one of a kind when Max left us.

She will forever be engraved in our hearts.

May you rest in peace, Max

Much Love & Tears,
The Holt Family
 

 
  My heart just breaks at the news of this loss and goes out to her family! I also had the honor of meeting Maxine in SLC and we all instantly fell in love with her. She had the best attitude and ALWAYS had a smile on her face. She will be greatly missed. Heaven truly gained an angel.

God Bless!

Annie Reeves

 
  Max was a loveable person and friend, She always cared about other people and what they were doing in life, Max had a wonderful warm heart and always gave good advice and right now I feel sad and at loos of a dear and wonderful aperts sister Maxine Reed. I Love you Max and someday we will be together again

Susie Lower
 
 
 

Wow, I was so suprised and sad to read the news of Max passing away. We never had a chance to meet, but was looking forward to meeting her in july. May you rest in peace dear max

kellie
mom to josie 3/apert
 

 
  in the words of max we aperts carpenters pfeifers can do anything i will never ever forget this awesome woman who said she was my sarahs adopted grandma. Tonight there are sad eyes a drink in my hand n maybe the max crawl tonight in Washington god bless my angel max luv tam
 
 
  Well, I thought I'd say a few things. I never met Maxine, Kelly talked about her every now and then. From what I've heard she seemed like a very nice and wonderful person. I'm kinda disappointed I wont ever get a chance to meet her. After reading the original post my heart just sank. Being that I never met Maxine it felt I just lost the member of family who I never met before. She is off to a better place now. Rest in Peace Max and watch over all of us. You will be missed.

Josh
 

 
  The tears just keep flowing. I can remember so vividly sitting in the lobby of the Crown Reef for the first time waiting to meet these other 10 families that began as our "get together" in MB. Max was there with her sister. They both had on red shirts. I remember thinking what a striking woman she was. She was the first adult with apert syndrome that we had met. Of course, we hounded her like crazy with questions. Jonathan was only 2 at the time and we were filled with uncertainty about his future. After talking and visiting (in the hallways for hours) with Max for a solid week, we left with a brand new outlook on life for Jonathan. She made it possible for us to look forward. We enjoyed every year we had with her at the beach.

Mechelle, do you remember Tim carrying Bob into the ocean. I will never forget how awesome that was and how excited it made Max. She loved talking about Sarah and we traded stories about having girls and their drama.

What a great role model she was for all that had the privilege to know her and we will miss her incredible spirit...

Max, I'm having a toast to you tonight!!! Keep smiling down on us and we will know you are the angel getting us through the next surgery.

With much love and thanks,

The Sieberts (Houston)
Brenda, George, Melissa and Jonathan
 

 
  Thank you Don and Cathie. I can't believe she is gone. Her and I used to talk all the time and then I haven't heard from her then now I find out she is gone. But she has no more pain and she is with our Lord and Savior. She will be missed alot.

Trish Perkins
 

 
  Good night Maxine. God bless for helping so many. So sad. Rest.

Kyle Peterson
 
  To Bob, Sarah and our loving extended family,

Max I love you & miss you my dear friend. You are our newly crowned Guardian Angel,wherever we go you will be right there with us always. I have found a poem online that I would like to share with all of you. Don can you please add the poem to Max's Memorial page. I hope everyone finds comfort in reading it.

The Day God Called You Home

God looked around his Garden and found an empty place.
He then looked down upon his earth and saw your loving face.
He put his arms around you and lifted you to rest.
His Garden must be beautiful, he always takes the best.
He knew that you were suffering, he knew you were in pain.
And knew that you would never get well on earth again.
He saw your path was difficult, he closed you tired eyes, He whispered to you "Peace be Thine" and gave you wings to fly.
When we saw you sleeping so calm and free of pain, We would not wish you back to earth to suffer once again.
You've left us precious memories, your love will be our guide, You live on through your children, you're always by our side.
It broke our hearts to lose you, but you did not go alone.
For part of us went with you on the day God called you home.

Max you will always be remembered, you will always be an inspiration to us all

Love,

Liz
 

 
  Max,

You are one of the most inspirational ladies in our lives ever!! You gave us so much hope for Jonathan's future the first time we met in Myrtle Beach way back in 1999. I will never forget how lucky we were to have you in our life. Your spirit and perseverance are contagious. We will always remember the good times and all of your guidance and hope for the future. You are an angel--keep looking down upon us.

With much love and thankfulness,

The Sieberts (Houston)
George, Brenda, Melissa and especially Jonathan

 

 
  Maxine was a nice person ever since i first met her she cared about everybody and she always had a nice smile she would always ask how your day is or how it's been going in life Maxine will be missed by everyone and she will be missed in myrtle beach this year Bob and Sara you have had a great mom/wife and she will be missed.

Hannah 19/aperts
 
 
  Rest in peace Dear Maxine..
Our thoughts and prayers are going to Bob and Sarah....

Theodor, Thea, Thomas
Oddveig and Kristian Skeide
Norway
 

 
  I was shocked when I read the mails about Max. I never met her, but her e-mails were full of strong words. a powerful woman she was.
My thoughts are with Bob and the rest of the family.

After the pain you will have beautiful memories

A big hug,
Mieke Maartense
(25 with Aperts, from the Netherlands)
 

 
  I can remember when we first meet Max at the Salt Lake City Retreat. She was awesome person. She gave me strength and encouragement. She will be truly missed.

Sandy(Sam 7/apert)
 
 
  Hi Everyone,

I just wanted the Max Reed family to know that they are in my prayers at this difficult time.

sincerely,

Shayne Stillar age 43 with Aperts
 

 
  What can I say? I meet Max in 2002, she was few people I visit since I wanted know everyone. I was always surprise she was oldest one in our group. How could I never forget when I was athlete of the year, she told me her famous lines we aperts can do anything we set our mind to do.

We'll miss you but see you really soon...Kris 25/ aperts
 

 
  To the Reed family from the Isaacs family in Vail, Arizona. Even though we never met in person, I will always cherished the wisdom of your words through the list. You will always be missed , we will remember you fondly, forever.
Sincerely,
Maria
 
 
  HI THERE DON I AM SO VERY SORRY 2 HEARD ABOUT MAXIE SHE WAS ONE OF THE FIRST PEOPLE I MET FROM THE LIST SERVER ONLINE SHE WAS A GREAT FRIEND AND PERSON AND MY ONLINE SIS YOU CAN SHARE THIS WITH OTHERS

DEBBIE
 

 
  Maxine was an inspiration.  Her smile, her sense of humor and, most of all, her attitude.  She will be sorely missed....

Sherry, Bailey, Laney & Kieran Roehl

 
     

My name is Maxine Reed and I have Aperts.

I was born in 1954 in Stockton, Calif. When I was born the doctors told my mom and dad that I wouldn't walk or talk. I would just lay there and do nothing, so they (my parents) should put me in an institution. Well my parents went and checked them out but, they didn't like what they saw, so they along with my older sister who's ten years older than I am and an older brother who's seven years older than I am decided that since I started doing all the things that normal babies were doing at the age I was that there was hope for me after all.

The doctors and my parents aren't sure what caused me to have Aperts. At the time my mom was working with x-rays at a dentist office and also had been exposed to the German Measles. But no one ever said what caused my Aperts.  My mom says that she had a normal pregnancy and didn't know until I was born that anything was wrong. At the beginning my parents decided that they would treat me like they treat my brother and sister even if I was the baby of the family, that also goes for my grandparents, they treat me with all the love and care that most grandparents give their grandchildren.

I cut my first tooth at a year old and I cut my third tooth six months later. My teeth grew in a little crooked so when I was about seventeen I had then straightened with braces. I started crawling at 8 mos. and took my first steps at 9 mos. but didn't start walking at a year and seven mos. because I had some surgery done on my hands and feet between 9mos and a year. When I was born my hands were like little rose buds. but they were gradually separated. I think I had my last hand surgery at seven years old. They separated my pointer finger and my thumb. They said at the time which was back in 1957-? that they wouldn't be able to separate the others. But now they have gone to great strides to be able to separate all of them. I was asked once if I would want to have all mine separated and I said no because I have lived like this with my hands like they are that I have adapted to it and can do most everything that everybody else can do, which is everything. I can write, tie my own shoes, comb out my own hair, cook, do house work and as you can see type on the computer. I pick and peck so I am no speed wiz but I get the job done. In other words I can do most everything. I was told that I noticed my hands at 2 mos. I still have web feet with big calluses on the bottom of them which I have them scraped off when ever they bother me. When I was about 9 or 10 I had some bones that were going on the side of my feet removed so I could wear some styles of shoes, but they grew back within two years. The doctors said if I had them removed again that they would grow back. So I didn't have it done again. I wear shoes like Reebok and aerosole sandal type shoes because they seem to be the most comfortable.

My mom says that I started climbing at ten mos. I started talking at about a year and half. I have never that I know of had any speech therapy. In fact my mom says that sometimes I talk to much. I have had trouble hearing at around school age, but it wasn't so bad that it was noticeable.  It's just this last past years that I have noticed it and now have hearing aids. I only wear them when I am around a lot of people and out and about town. When I was about 12 or 13 I had a tonsillectomy-adenoidectomy. It helped from me getting so many sore throats.  I don't have any breathing problems like some Aperts but then again I haven't been tested for sleep and breathing disorder.  My husband does say that I snore at times and I am a real good sleeper. I wore glasses when I was younger but didn't wear them all the time. The optometrist one time said that my eyes take turns seeing, but now that I am older I am finding that I need them, just like the rest of my family does when they turn over forty! I have no know allergies like some aperts people do to latex except for Sulfa which they used years ago for anesthesia and they use in some drugs. I have very small veins so when ever they take blood or give it they have to use the butterfly needle on me and then they can get it each time.

I just want to add that I have never had any seizures like some aperts have had. My school years were not all fun and games, some of my grammar years were spent in special aid classes. I liked those times the best because the kids didn't make fun of me. I think it should be up to the kids and to the parents if they put their children in special classes my parents felt that where ever I was happy thats where I should go and I was getting a good education. I should say that people with Aperts aren't dumb like some people like to believe we do have some that have gone on to college and got their degree. I just didn't because I was offered a teachers-aid job and I felt I had enough of school. My family treated me like the rest of the family, we went on family vacations and had family get-togethers. I got my fair share of spankings when I needed them, and all the love a family can give. When I turned twenty-one I had my first major facaal surgery. They first just did my forehead, cheek bones and jaws which I had my jaw wired up for 6 weeks which was great because I lost a lot of weight. Then the next year I had my nose job.  At first I didn't see a whole lot of change, but everybody told me there was. It wasn't until I had a picture taken and compared it with my graduation picture from high school (which I have on my page) that I noticed the change and I loved what I saw and I still do. I haven't regretted it one bit. I think its wonderful that they can do facial surgeries to the little ones at such young ages and separate all their fingers. The children of Aperts today don't have to go through all the cruel words and stares that I went through and still do sometimes.

At twenty-four I decided it was time that I spread my wings and move-out on my own. My parents at first were kind of hesitant but then they gave in. I think my brother and sister had something to do with it. I think they thought it was time for me to move out too! So at twenty-four I moved out on my own. It was a lot of fun and enjoyed my freedom until at 30 I became pregnant with I guy who was normal and said that he loved me, well he didn't want to marry me so he left soon after my beautiful and very healthy daughter was born.  I was told when I had my facial surgery by a genetic counselor (which I'm not sure why they had me talk to one, I guess it was the Lord doing it because He saw what was going to happened in the future). that I would have a 50/50 chance to have a normal child, well I took that chance and with the Lords help I had a healthy 6lbs and 8oz baby girl. She certainly is a gift from God because even though she normal, she didn't want to come in to this world the normal way. When I started into labor I became toxemia and also Sarah was breeched (she wanted to come out running I guess). So I had a C-section. When they were closing me up after my C-section they had trouble closing me up because of all the scar tissues from my hand surgeries and from my appendicitis that I had when I was 8 years old. I don't think that my having problems while I was going into labor has anything to do with me having Aperts. It's by the grace of God that I survive.

Three months later after Sarah was born I met my husband Bob Reed. We had a whirlwind courtship and three months after we met we got married on June 30th 1984. It has been a wonderful 15 years. it's been rough at times. But our love for each other grows each years. Bob adopted Sarah shortly after we got married. We decided not to have any more children because my doctor said that there might be a chance I might die the next time I go into labor because I had so much trouble with Sarah. So we decided not to take that chance. We are happy with what we have and Sarah loves Bob as her own father. Well that's the end of my Story. I just to say to all parents with Aperts children. Don't treat your children any different than you would a normal child. My parents didn't, they let me fall and struggle over the hard stuff. They even let me get my drivers license when I was 18. I probably could have gotten it sooner but I wasn't ready to drive yet. The saying around our house that I CAN'T isn't a word and I CAN is. So we Aperts CAN do everything we put our minds to it. Enjoy your Children give them a lot of love and let them be the best they can be. The Lord will be there for them.

Happiness,
Maxine Reed in Modesto, Calif.
My friends and family call me Max

PS - I wanted to add that I had my hands and feet surgeries done at Shiners Hospital in San Francisco and my facial surgery at UC of San Francisco. I was born on June 3, 1954.


This page last updated October 5, 1999

 

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