We would love to hear from you, so feel free to contact us at the following e-mail address:
acsnlk@yahoo.com
Raising Leah
RAISING A CHILD WITH ACHONDROPLASIA "DWARFISM" IN SOUTH AFRICA
We would love to hear from you, so feel free to contact us at the following e-mail address:
acsnlk@yahoo.com
Raising Leah 
great job
I have to say I respect you in every aspect, your daughter is beautiful and very lucky to have you as a mother. Im a 19 year old girl who also suffers from Achondroplasia, I do have to admit that my childhood was rough on me but I am now a mother to a very happy 4 month old baby boy who also suffers from Achondroplasia. We just wanted to say hello.
Kudos and very best of luck to you and Leah. She is gorgeous.
A well-wisher.
great site!!
never gave thouht to this condition before but as i was laying down newspaper for my new puppy, your article caught my eye. could’nt read it without glasses so just put it one side.
three days later i picked it up to read it. well, needless to say i read your blog and i have a question for you. if such a child showed a definite penchant for music (playing it, that is) what would be your recourse?
let’s say, piano ,for instance. i ask this because i have no idea of the size of your child’s hands or the length of her arms. given what i do, i may have just the solution for such a talent.
if you are interested, drop me a line to the above e-mail.
i would love to meet these children!!!
mike
Hello, Leah is so beautiful. Looks very much like my own daughter Sharifa.
She’s only 2 months old and only 2 days ago was confirmed to have Achondroplasia. I do not know anyone with a similar condition. Where i live there isnt any support group for parents or people with this condition. Would ou recommend any books to read? i’d appreciate to hear from you.
Hallo Leah. I think it is great that your Mommy started a blog just for you. I also have a little Leanelle but we call her Lea. Leanelle’s dad started a blog fer her, and we though it was great, till we opened your b-day photos and the video clips on your friend’s blogs, we have a lot to learn about being creative. Leannelle is 7months old and so sweet. Mianke (age 4) is her sister and she loves Lea very much and she is very protective off her.
We would appreciate it if your Mommy could add Leanelle as your friend, I am not sure what the information is that she will need, so please Charmaine let me know. (www.Leanelle.wordpress.com)
Hope to year from you soon.
Hi Charmaine, I first saw your article in Living & Loving when Leah was born. Then found you on facebook, my daughter Amy is 9 and has Achondroplasia, Amy was very excited to see pics of other children with dwarfism. When Amy was 3, Heibrie Barron (her daughter is also a dwarf) and I started Little People of South Africa in Jhb, sadly it sis not take off as we’d hopes so I would really like to get in touch with you.
Hi Sandy
I have a five month old boy with achondroplasia and want to meet other parents with similar children. I live in Johannesburg and would love to help you get something started here. Please contact me at cdathomaz@gmail.com
Hi there,
I am doing an oral presentation on achobdroplasia for a school project. I choose your daughter, Leah. She is a beauty! What a wonderful story, thanks for sharing with us. Can I ask you a couple questions? How was Leah’s diagnosis made, and what was it like getting the diagnosis? How is your life different as a result? It seems you and your family are doing wonderful, you are very blessed. Thanks for your time…
Justine
Hi! I’m featuring Leah in a Powerpoint Presentation I’m doing for class at Heald College on Monday, December 13th. I noticed that October has become NATIONAL DWARFISM AWARENESS MONTH. Did your experiences have any influence on this month being selected. I noticed that Leah’s birthday is on October 16th. Did your efforts to raise dwarfism awareness in South Africa contribute to this decision? I applaud your determination.
Hello Charmaine,
You’re doing an amazing job by raising awareness to people about dwarfism. I was born with achondroplasia, like most cases the first in my family. However, I recently became second when I gave birth to beautiful little girl with also has achondroplasia, she is a “mini me”. I find this blog very helpful because there isn’t too much information available out there about raising a baby with dwarfism. My baby name is Keilee Sofia and she’s almost four months old, perhaps her and Leah can become friends someday. Take care,
Dexie
Boston, MA
I have to say that I was touched by your video and story. Your daughter is beautiful and an absolute gift. My husband has achondroplasia and my little boy Ariel of 5 months has it also. You are making a huge difference to the world by letting people know how precious these little people are.
this website is great thank you for making this site and posting this up on the webb because more people need to know about dwarfism and what goes on when some one has it and what people say and do to them and how it makes them feel when they are called that word….in my science class we have to do resseaarch on a some relavent to science i choose mine one dwarfism to help raise awareness on it and let my fellow class mates know about this topic and inform them on it as much as i can so they will know much great knowledge on it and know not to use that word to these people or around them and let them know to show some respect to them…..this site also changed my whole perspected on this topic and i can feel what they feel just by reading some of the story(s) you posted on this site and i hope to make a diffence in other people just like you did in me thank you so very much you are doing a very great thing here….:)
Hi everyone,
Wow!! You are truly inspiring! I am currently investigating getting a clothing line together for Little People. Would anyone be interested in something like this?
Kindest Regards,
Natasha
Hi,
I’m from The Netherlands / Europe 54 years young.. and born with Achondroplasia.
In 2010 I joined the LPA / DAAA USA convention and made a film about there sports days. Have a look, regards Hans Morisson
Hi,
I saw your story on The Power Within. Leah is beautiful and will bring you lots of joy. I wasn’t born with Acchondroplasia but with Cerebral Palsy 34 years ago. I said to mom a few weeks ago that God only gives us “special needs” kids to special parents.
I know it’s not easy and Leah will have obstacles to overcome but I can already see that she will overcome anything she wants to. She has a wonderful family who loves and supports her.
God bless,
Bridget
fffThank you for your story. You have a healthy prospective and I know how frustrating it is when people do or say things out of ignorance.
I am visually impaired and I have a Seeing Eye dog. I have some sight. In fact, before I got my dog, a lot of people didn’t know I was legally blind. I absolutely refused to use a white cane. It’s potentially dangerous for a woman. I got tired of hurting myself. When I came home with that dog, everything changed. People routinely stare and some will go as far as talking about me as if I can’t hear them.
I’ve learned something though. While some people stare for negative reasons, for a lot of people. seeing a dog work is a rare thing and they’re going to stare because they are fascinated. I don’t mind being stared at, but I don’t want to be touched. Occasionally, I’ll board the bus and someone will try to pull me down into an empty seat up front where my dog will get stepped on. More than once, I’ve had a fight on my hands, just to sit where I can tuck my dog under the seat. People don’t know that a trained dog will do this.
I am not afforded appropriate social boundaries because I don’t see very well. Truth is that I can run circles around most of those do-gooders any day of the week and they, NOT I, are pitiful.
I’d imagine you run into the same boundary issues with your little girl. I saw a video on YouTube about a little girl with primordial dwarfism. (Kenadie) You’ve probably seen it. I was shocked to see people handling her like an object instead of a human being. What I live with is mild by comparison.
I decided a long time ago that I wasn’t going to “accept” my disability. I was going to OWN it. I determine what it is and isn’t. I decide what the implications are and I will stand my ground in maintaining my ownership if anyone tries to define it for me or otherwise control me. I decided that if I was going to have this disability, I might as well enjoy it.
I chose to use humor as my ice-breaker with strangers. A few are offended, but a lot of people find themselves laughing and realize that I’m no different from them, other than the fact that I’m smarter than most. People describe me as “fiercely independent,” because I prefer privacy when going to the bathroom. Imagine that. 🙂
People can’t believe I’m an artist because they don’t understand the difference between crossing a street and looking at a computer screen. A few believe I’m faking blindness because I “look normal.” whatever that is. I’m far from normal, but that has nothing to do with my eyesight. People tell me I don’t need my dog. That’s because they weren’t there when I stepped off what I thought was a curb. It was nearly three feet high.
My opinion; There is something beautiful about dwarfism, especially in a child. One can go through life and never meet up with a little person. It’s just about impossible for many of us, myself included, (and I should know better) not to take a long look at such a rare enchantment as your little girl. Please forgive us. It’s a little like looking at the most beautiful rose in the garden.
Your little one is just like any child, but people are, for reasons stated, going to be intrigued when they see Leah. Personally, I now generally take staring as a compliment. That is because it often brings out the best in others. I’ve met some wonderful people I would otherwise, not meet. Some people are controlling, but most are very kind and helpful.
Thanks again. I hope other parents who have children that have disabilities are encouraged and don’t feel alone in the struggles they face.
God bless,
Shelley
We are in 8th grade, and we got assigned a genetic disorder of achondroplasia. While doing research, we cam across your blog which inspired us to make a blog for our project. This helped us alot to make our story sound real.
Leah is so cute! My friends and I have watched all the videos and looked at all the pictures of leah, and decided that she should be a model(: She is SSSSSSOOOOOOOOOOOOOOOOOOOOOOO CUTE!!!!!!!!!!! (: I love reading your blog(:
~Maddie(:
I am currently 32 weeks pregnant with our second child who the doctors think may have some form of skeletal dysplasia possibly achrondraplasia. It was a routine check on a low lying placenta that brought this to our attention and it has really rocked our world. Our wee girl appears to be so happy inside me and has a strong heartbeat and moves around so much I can’t comprehend that she may have ongoing health problems when she is born. Your wee Leah (great name by the way) is just absolutely gorgeous and it really gives me hope that our wee one will be ok and while life may have it’s challenges we can still be a family. Thanks for sharing your story xx
Hi Charmaine. I am trying to get in touch with a local dwarf community (Bloemfontein). The South African link on your site is broken. Do you perhaps know whom I can contact in order to find out if there is a local community?
My daughter has achondroplasia and she is 3 years 3 months old . I want ask if you can email back with your experience on how Leah got attach to loving school. I’m nervous to have my daughter be left for 4 hours in preschool please advice. Thank you .
mel
Hi, I am trying to find any information/support groups in Gauteng area (or anywhere in SA) for Russel Silver Syndrome… It is not exactly dwarfism, but this is the closest I have come to finding anything. Thank you!
Danika
I’m 28 years old have a 1 year 9 months baby girl who has achondroplasha I would like to learn more about her condition and join associations for little people for moral surppot and to teacher people about this condition especially at government clinic because every time I go to the clinic I have to explain why my child is under weight please reaply I’m from diepkloof soweto
Hi there Ive realy enjoyed reading your Blog its great and realy informative. My little boy Joe has Achondraphlasia and I have realy found your words very informative. I was wondering if you knew of any other moms in durbs with kids with Achondraphlasia.
Its all soooo crazy, but when I was pregnant with my little girl I was told that she was going to be born with a form of dwarfism. I was scared to death. I researched and YouTubed. To this day I remember watching this particular video that was put together of Leah…. her siblings…and just day to day life. It was snapshots put together like a slideshow to a song. She seemed so happy. I promise you that single video was an answer to my prayer. I was so worried about my baby, and all the complications. I worried myself sick. Seeing Leah… so beautiful and happy put my mind at ease. I cant tell you how many times I watched that video…. and I haven’t watched it since she was born. Its strange because I would look at my daughter and think… she even looks like Leah from the youtube videos I watched. They could be sisters!!…. Today Grace is three and a half…beautiful. .. smart… and so happy. She is in the hospital today. I was googling something about dwarfism related to her condition… and spotted something that had a picture of Leah… with this link. Nice to see she is still happy. Thanks for the video you posted years ago. If there is anything that me or Grace could do to help raise awareness. .. we are game.
Does this little beauty have a Facebook page
Hi Jody… we do not have a FB page but we are thinking of starting one so I will keep you posted!