For those of us who have been on this Rett journey for a while, we have bonded in ways we never thought possible. We who have participated in this web page, hope that the parents who will follow in our paths, will know they are not alone and can always turn to us for support.
we must take them and love them as God gives them to us."
- Johann Wolfgang von Goethe
Dani's picture
You can read more about her at:
Dani's Story
She attends a special ed school.
She is basically healthy, but does have scoliosis, and seizures which we have not been able to get under control. She has been on Tegretol and Depakote, which did not work. She is now on the Ketogenic Diet, which has helped, but she still has about 4-8 grand mal seizures a month.
She loves to eat, likes music, and Barney, as most of the girls do.
She is non-ambulatory and never did walk. Her regression started early (about 6-8 months). She was diagnosed with Rett Syndrome when she was 3 after seeing many specialists. We actually figured it out ourselves after reading an article about Rett Syndrome, and then it was confirmed by a pediatric neurologist.
She is the light of my life, and I cannot imagine not having her. She has no speech, but communicates so much with her eyes and her pretty smile.
e-mail her mom
Her oldest sister, Sandy, has 3 boys and Peggy, the next sister has a girl and a boy.
Kristy attended school at Southgate for many years but she has been bed fast for the last 4 years.
As for food, she gets 6 cans of choice spaced over the day with her meds in between.This is done by her Peg tube. If you are good with math, that measures out to every 2 or 21/2 hours.
Her meds consist of Dilantin--Depacote--Topamax--folic acid--lactalose and vitamins.
Kris has her own tv,and also loves any music (except mom's singing).
She has a couple of nurses that come in a few days a week, who are wonderful with her, but spoil her completely.
Kris has trained me so well over the years, that I know very quickly what she wants. She has names for almost everyone and uses them, if she feels like it!
Having company is the highlite of her day.
Needless to say, SHE is the highlite of MY day.
You can e-mail Kristy's mom at:
Jan Westover
Ashley lives in College Station, Texas, home of the Fightin' Texas Aggies with her Mom, Judy Fry, and her Dad, Clifford Fry.
Ashley attends A&M Consolidated High School and she still walks and is able to eat anything she wants, including hamburgers, hotdogs, chips, popcorn, nuts, etc.
Ashley's favorite activities are going to movies, which she sees at least one new movie a week, going to restaurants, music festivals, and anywhere her family goes.
Ashley has one sister, Kristin Babineaux, who is 29, married to Scott Babineaux, and mother to Alexandria Babineaux, who is 16 months old.
As Ashley has gotten older she has learned to communicate her wants. We taught her early on to touch whatever she wanted, so she will walk up to something and touch the object or food, and we will then give it to her. If she wants to go somewhere, she will walk to the back door. If she is outside she will walk to the car. Ashley uses yes and no cards and has learned to read by touching the requested sentence on cards. We plan on
getting Ashley a communication board soon.
Ashley has become such a joy to our family. She literally lights up our world with her smile, hugs and kisses. I cannot imagine a life without Ashley. Having a child like Ashley was certainly not something I ever dreamed I wanted or needed or could possible cope with. God, obviously, had other plans for us. I am constantly reminded of Garth Brook's song, "Unanswered Prayers". Ashley is OUR unanswered prayer.
You can see Ashley's picture at:
Ashley
You can e-mail me at:Judy Fry
We have two other children, Laurel 40, who lives in Ft. Knox, KY and has a daughter, Katie, 14, and our son is Frank, 33.
Sheila now lives in a group home, but was with us until she was 18. She lives about 10 minutes away and attends a day treatment program run by the county ARC.
She walks and like so many Rett girls, loves food and music, in that order!
She interacts, non-verbally, and is very much beloved at the group home.
You can e-mail me at:
Maryalice O'Brien
Ann attneds Bullitt East High School and is in full inclusion classes with support. She is very ambulatory and wears glasses mainly to protect her eyes.
Ann likes music, especially Garth and Shania, loves to eat and is a people watcher.
She communicates currently with body language and her smile. We are working on augmentative communication and plan to use the Macaw with a One-Step Ablenet switch to access with scanning.
Ann loves people, she loves to be the center of attraction and her smile usually puts her there. She talks with her eyes and wraps everybody, who gives her a chance, around her finger! Without them even knowing she is able to get them to do whatever she wants, all that and she can't even talk! I have always felt that Ann was an angel sent to us and was floored when I read about Rett syndrome and how these girls are called Rett Angels, I knew then that Rett Syndrome was what caused her disabilty.
Ann has brought out in me things I never knew I had; patience, strength, and the uncanny ability to advocate. I have taken on the local school district and succeeded, before she came into my life I would never have believed I could take on "City Hall" and win without lots of money invested in a good attorney! But she has given me strength and belief in my abilities so much so that I would be unafraid to attempt to correct the wrongs of the world now. Isn't it amazing how your children are a driving force. Because of Ann we are now a part of a TASK Force of parents to create a quality education for ALL Special Needs students in our school district. We are truly blessed!
You can see Ann's picture and read more about her at: Ann's Place
She is living at home with her brother Jake (11) and has an older sister, Jenn (23) who is finishing her masters degree in occupational therapy, at NYU (only 6 months of affiliations left to go, the classes are all done!!).
Jocelyn has never walked, but she has a van to get her and her wheelchair wherever she needs/ wants to go. She also has the support of her friend and CNA, Meloney, on a daily basis since graduation. These two young women always have somewhere to go and something to do.
Jocelyn loves adventures and lots of action. Some of the ways she spends her time is swimming, hiking, horseback riding, boating, skiing, visiting friends, going to the beach, going to concerts, reading, music, shopping, being pampered (massages, manicures etc.) attending sporting events (her brother plays lots of sports) finding opportunities to share her gifts by volunteering in the community. All of her activities are possible with physical and emotional support from others. We have found that she supports us right back too!!
Jocelyn likes to eat almost anything but has been on a macrobiotic diet since she was 3 and avoids, red meat, dairy, sugar, salt, citrus/tropical fruits and white flour. She still has an incredible appetite and eats lots of whole grains, fruits, vegetables, chicken, turkey and fish. (she also likes beer, wine and margaritas, but they are not "legal" on her diet ...or her ID yet, so she cheats occasionally).
She interacts easily with others even though she has never spoken. Her eyes tell her story as well as her smile. When people interact with her with respect, she will connect and communicate pretty clearly although not specific. Many people feel very comfortable with her in a very short time and I am told often that people "forget" she can't talk because they communicate so well with her.
Her website is at Jocelyn Curtin.
And you can see her picture at Jocelyn
You can e-mail me at:Marlyn Curtin
Her older brother died at 1 yr. She has a sister Laurie, 36, who is a nurse in the burn unit at a hospital in Las Vages. She has two children, Katie 12 and Joshua 8.
Her other sister, Terresa, 34, lives in Ottawa, KS and taught vocal music K-12 for 8 yrs. She now home schools her children. Stephaine, 9, Erica, 5 and has a boy Andrew, 1, and one on the way in Nov.
Lisa has a younger brother, Jason 26. He's still living at home and drives heavy equipment at a rock quarry.
Dad is a punch press operator and Mom is a transportation supervisor/driver for the local school district.
Lisa's first signs of maybe something was wrong appeared at about 5-6 months. She didn't want to put weight on her legs. She was a chunky baby, 25 lbs. at 6 months. Drs. didn't seem to think anything was wrong. Just a big baby etc. Finally at 2 yrs. they decided maybe something was wrong.
She had hand use, fed herself, played with toys, all the normal things.
Talked before she was a year old very plain and appropriately. Even put several words together. By 1 1/2 years all this stopped.
She was first diagnosed as CP, this didn't seem right, didn't fit. A year later at another hospital they told us it was not CP but didn't know what it was. All tests were normal.
Over the years we just treated symptoms as they came up. Scoliosis (eventually surgery, Lutke rods at 18) Seizures at 14, She takes Tegratol and phenobarbital and hasn't had a seizure in years.
She has episodes of extreme scratching at her legs.
Finally when she was 18, My sister saw a news interview in Kansas City and called me, she said you wouldn't believe it, it was Lisa exactly!!!! She got me in contact with Susan Jarsulic and she sent me information.
There was no doubt in my mind then that Lisa had Rett syndrome.
It really was a relief to know after all those years. We weren't able to find a doctor that could confirm the diagnosis till she was 20.
Lisa attended Tri-county Spec. Ed. till she was 21and then was at home with us till she was 24 because there were no programs available for her. We then decided to try a intermediate care facility where she could get therapy and have others to socialize with.
Over the last few years her physical condition has deteriorated. She hasn't walked in almost 3 yrs. also had a G-tube about the sometime she stopped walking. She has problems with blood clots and takes Coumadin for that. She had a Fundo last Aug. Her lung was collasped during surgery so it took a little longer to recover. Now just a few weeks ago she had a broken leg and had to have surgery to repair it. Drs. say it's most likely beause of her inactivity and contractures in her legs.
Lisa has no way of communication except by facial expression and fussing.
She loved to eat till she had the g-tube. She no longer has anything by mouth.
She loves music, that's her thing and always has been! She also enjoys watching T.V. and really gets into basketball and football. She also likes to take rides in the car and being where she can look outside.
She is now in a group home with six clients that is a 30 min. drive from home, and comes home for visits. Right now she is more alert and happier than I've seen her in years.
You can e-mail me at:Joyce Norris
HOME LIFE:
Ashley lives at home with me, her mother, Barbara, in Sacramento, California. The rest of our family consists of her older sister, Monet, and Monet's kids, Saera (9), Brandyn (7), Tanner (4) and Dacoda (3). Monet and her children lived with us for a very long time, but have recently moved into their own home, but the kids all spend a lot of time in our home. Ashley just loves each of them to pieces. She loves to watch them act goofy and challenges them to a contest of who can make her laugh more; this makes for some funny video moments.
MEDICAL HISTORY:
Ashley was diagnosed at eighteen months old as having Rett. Although It was noted at six months that she was not very active with toys and such, I did not become alarmed because she did interact very playfully with her sister and myself. She became epileptic just a couple of months shy of her fourth birthday. The seizures controlled our lives until I placed her on the Ketogenic Diet for seizure control when she was eleven years old. Now, at age fourteen, they are down to maybe one per day, if at all. They no longer drain her - she pops up with a huge smile and is ready to go on with her life. She has had two operations to improve her heel cord functioning, the first was non-invasive in which they simply nicked the cords from the outside and the second more successful where they actually opened up the area to cut and stretch the cords. A couple of years ago she had a fundoplication done along with the G-tube placement at the same time. She has always had a problem gaining and maintaining weight even when she ate like a piggy; after this operation and the introduction of Boost Plus to her diet, she now weights 46 pounds and is healthier than we ever expected she could be. Just last year she had oral surgery to remove the baby teeth that weren't coming out on their own, and she will soon get braces to correct her bite. I am hoping to have the leg rotation surgery performed to keep her leg and foot from rotating to the inside, which hampers her walking. The quest for this operation has brought up an ugly side to medicine - the side that asks, "Will this child understand that something has been done for them?" In other words, if her mental capacity isn't capable of understanding the difference, why do such a traumatic procedure?. Got news for them - she's definitely smart enough to know the difference because she won't have to work so hard to walk, and this will not be the most traumatic thing she's experienced. Having seizures virtually hold your life hostage has got to be much more traumatic and she survived that!
SKILLS:
I quit work in 1994 to work with Ashley at home, and after five years, the effects are really showing. She walks for long periods of time, although she does need to hold someone's hand to gain better balance, which I'm hoping the operation will improve. With the use of her elbow braces she is beginning to use her hands for things other than checking to make sure her teeth, tongue and tonsils are still in her mouth. Her self-feeding skills are coming back to her very quickly after being strictly tube fed for two years. She is extremely vocal, although she does not form words. Her communication skills are greatly improving in that she now chooses between two objects with strong preference. While being read to she will frequently reach with one hand to hold one side of the book. Taken one at a time, these are all small things, but looked at in a group it is obvious that she is on the upswing and getting ready to do more.
FAVORITES:
She adores the Disney Classics video collection and even has her favorites, most favorite being Snow White and the Seven Dwarfs. And then there is music - Baby Shania has become her nickname due to her love of Shania Twain's music. Her excitement gets her grinning ear-to-ear and she bounces around like she's sitting on hot coals. If we're in the car and Shania comes on the radio, I am immediately thankful for the seatbelt as I fear Ashley would jump out the window and boogie on the highway. It's the cutest thing to see her long pony tail bouncing wildly as she's bobbing back and forth to the beat, all the time she's vocalizing to the best of her abilities. It is at these times I am grateful I'm not dealing with a "normal" teenager - mine would probably be in a rock band with green and purple hair and studs all over her body. For quiet time I read to her while she snuggles in my lap, this is one of my most loved things to do with her. Outdoors her favorite activities are walking, people watching and looking at flowers.
EDUCATION:
She attends school full time and has a one-on-one aid that works with her under the guidelines of an intense program set up by me. The aid and I work closely with each other in all phases of her schooling, therapies, and medical treatments to assure that she is getting the same quality care away from home, that she does with me. The process of obtaining the one-on-one aid, and the authorization to design the program around my specifications weren't easy to come by; the time and effort put forth and the tears shed were all worth it. She will now get the quality instruction that I know she understands and relates to, as well as having someone there for her personal needs that will also have time to give her the warmth and affection that makes her want to keep trying.
MOTHER'S PHILOSOPHY:
Like most mothers I can't imagine anything I wouldn't do for my child. However, as the mother of a severely disabled child I am constantly being challenged by idiotic rules and regulations, personalities that are stark void of any compassion as to what we have to deal with just to get through the day, and by the sheer terror of knowing that the next medical emergency could be just around the corner. I decided immediately when Ashley was diagnosed that I wasn't going to let this thing beat us. I have always attended to Ashley with the utmost care and respect, and demand that others in her life, whether they be educational/medical professionals or friends and family offer her the same, or they needn't be involved in our lives. With fourteen years between my daughters, this always felt like the second time around as a mother, the greatest difference is that as I was raising my first and teaching her to have love and respect for herself and others, I could point out those that where not offering her the same. I can no longer parent in this fashion; I must be the eyes, ears, and heart for this child. And I have to be willing to do this with no reservations on my part - no fear and no fair backing down when things get tough. I owe her this above all else.
Barbara Lahmon
Sacramento, CA
Angela attends school 1/2 day at the local high school and 1/2 day in the Special Education School where she receives her therapies. After school, she attends a YMCA after school program until 6 p.m. She also goes to a YMCA summer camp program.
Angela walks with assistance and wears an elbow brace. She had scoliosis surgery at the age of fifteen. She has seizures and takes medication to help control them.
Angela likes to go to movies. She also likes to swim and travel. Her favorite thing to do is go out to eat. Angela is a good eater and likes beef, vegetables, pasta, chips, coke, iced tea, chicken and fries. She does not have any difficulty with chewing or swallowing but does take medication to control reflux.
Angela is very social and loves to be with people. She is particularly found of her brothers' friends, both male and female, and most adults. She uses a few words of speech and picture symbols to communicate. She also has a Cheap Talker with pictures symbols that correspond to recorded messages. She can make choices by touch or eye gaze. But her eyes and facial expression tell us more than any other method of communication. She is so expressive. She will roll her eyes in disgust, smile with delight, twinkle with mischief, bang or touch for attention, and frown if the response is not quick enough to suit her.
We call her Angel or "Princess" as she is both. She enjoys makeup, jewelry, cool clothes, getting dressed up, nail polish and having her hair done.
This is her home page:
All About Angela
She has a 3 year old brother, Carlos, a 21 year old step-sister, Renee, a 26 year old step-brother, Anthony and the best daddy in the world, Tony.
She has taught me so much... Patience, unconditional love, understanding, compassion and the list goes on.
Veronica had surgery in February. Pilonidal cyst just below her tailbone. OUCH! She was almost recovered from the surgery, then she came down with pneumonia. Then she had a breath holding episode and turned blue. I'm not sure if it was due to the pneumonia. She is finally better. She is still not her usual happy smiling self.
Maria Ramos
Coreena is 22, the month before her 21st birthday she was diagnosed as having Rett Syndrome.
From the time we were aware of her having a problem (15-18months old) she had always just been classed as Intellectually handicapped, no diagnosis. It has been extremely hard on me as her dad 'split' and the only support was the general 'parent with IH child'.
Meetings were few and far between.
My sanity was retained by the unexpected arrival of another daughter. A gap of 13 years...Stephanie is 10 now and has been my shoulder to cry on - my loyal friend, my supporter and much more.
After Coreena was diagnosed I searched the web for Rett Syndrome and once discovered, signed on to Club Rett.
In this simple act of subscribing, I have, on line, something I have hunted for, for twenty years. I have found group support for the first time in Coreena's life. Over, coming up one year, I have not only found support for Coreena, having Rett, but support for Stephanie as well as my self.
You can e-mail me at:Robyn Buckle
If you want more info on Rett, or to add your daughter's story, please e-mail me at:
Connie Coughlin
I hope you enjoyed this little journey into the lives of our older Rett young women.