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