Below are some of the most frequently asked questions that Jeremy and I receive in regards to our dwarfism. Our heart is to educate and remove any fear of the unknown. If you find yourself wanting an answer to a question not listed below, feel free to ask via our Contact Page. We would love to continue spreading awareness by answering questions as they arise.
Skeletal Dysplasia is an umbrella term for hundred of conditions/types of dwarfism affecting bone and cartilage growth.
There are over 200+ types of dwarfism, some having only one known case on record.
The most common of types is Achondroplasia.
We have the most common type, Achondroplasia. This affects our bone structure by impacting our bone growth but not our intelligence. We have an average sized torso, and shorter arms, legs, fingers, and toes. Our skulls are also slightly larger than average.
We love to be called by our names, but if you were to describe our condition, you could say little person (lp), dwarf, someone with dwarfism, short statured.
We like to refer to people that are unaffected as average instead of normal. Normal implies that we are not normal.
Absolutely - 100% - Everything about the term Midget is offensive. This is a term that is very derogatory and dates back to the freak show and circus era, where little people were only viewed as capable of being put on display for public entertainment. Similar to other derogatory slurs referring to other races or abilities, this is a term that should never be used and is very hurtful.
Jeremy is 4’ 7” and Megan is 4’0”.
The average height for males with achondroplasia is 4’4” and 4’1” for females.
80% of all little people have average sized parents, while 20% of little people also have parents that are little.
Jeremy and I fall in the 80% window and are the only little people in our families. However, now that we carry the gene for achondroplasia, we also have a daughter with dwarfism.
Achondroplasia is a dominant genetic condition and it only takes one gene to have the condition. If the person with dwarfism conceives with an average sized person, there is a 50% chance of having a child with dwarfism and a 50% chance of having an average sized child.
If two people with dwarfism try to conceive (like Jeremy and myself), there is a 50% chance of having a child with dwarfism, a 25% chance of having an average sized child, and a 25% chance that the child will receive both of achondroplasia genes, resulting in a lethal diagnosis to the baby. For more on how we personally walked through our genetic journey with our baby girl, check out this blog post.
As children some of the most common complications are:
Compression of the brain stem - This is when the base of the skull is too small and can pinch the spinal cord. Surgery is required to open the base of the skull.
Hydrocephalus – This is when extra fluid surrounds the brain. A shunt is usually put in to drain the excess fluid.
Obstructive sleep apnea – This is due to airways being too small or improperly shaped, which can cause breathing issues while sleeping.
Lily so far, has had zero complications related to dwarfism. When she was born, she was diagnosed with pulmonary hypertension, which can occur in any patient of any stature. We have follow up appointments with genetics and orthopedics as she gets older, to keep an eye out for any of the common concerns that can arise with achondroplasia.
As adults, some complications can be spinal stenosis, painful joints, and arthritis.
Both Jeremy and I are relatively healthy. I had the compression surgery on my neck when I was 8 months old as well as my tonsils and adenoids removed to help with sleep apnea. I’ve also had my legs straightened when I was in high school to relieve the pressure off of my knee joints due to bowing legs. We have both had multiple sets of tubes put in our ears to help with small canals and trouble hearing. Jeremy has had only a few surgeries, while I have had 14.
There is no official “cure” for dwarfism. There are growth hormone therapies and limb lengthening surgeries that are very controversial in the lp community. There are also drugs that are in the testing stages that are claimed to help and reverse some of the symptoms that are related to dwarfism. However, it is too soon to tell if there are any negative long-term effects from these drugs. Jeremy and I believe that there is no need for a cure. We feel that God made us little and we were made for great things. To see a blog post on whether I feel like God made us as a mistake, click here.
Simple. Both Jeremy and I use pedal extensions. They are simple contraptions, mostly a pedal on an adjustable metal rod. These pedals attach to almost any vehicle and can be easily taken on and off. I have always needed extensions to reach the pedals, whereas Jeremy is tall enough that depending on the vehicle, he may not need them. I also sit on a small triangular shaped pillow to make my seat flat instead of it sinking downwards in the back.
We ask for help when needed. I like going with Jeremy to stores since he can reach most things that are up higher. He’s 7 inches taller than me. If he can’t reach something, he’s not afraid to climb on a shelf. We also will find longer objects nearby to knock something off and catch an item that is located out of reach. If we see someone nearby, we will usually ask for help. Depending on the shopping carts, I usually load my shopping carts in the top basket, where kids sit, or in the front end of the cart, where it’s shallower. If Jeremy isn’t with me to reach into the cart, I will sometimes load smaller items into my reusable shopping bags (California charges for shopping bags unless you bring your own). I can then pull out the entire bag to load up onto the conveyer belt.
I don’t think so. I actually appreciate when someone offers to help. I tend to be really stubborn so sometimes don’t like to go out of my way to find assistance, so I don’t get offended when someone offers to reach something for me. They are usually more uncomfortable asking, especially when they see one of us climbing.
It depends how it’s done. If one were to bend over with their hands on their knees, this is a bit condescending. Although if someone were to get on a knee or squat or sit on a chair, in order to have an eye to eye conversation, this can be really helpful and appreciative. This is especially helpful when in a large crowded room or party like setting. It can sometimes be challenging for us to hear conversations, so getting down on our level is nice.
Please make some sort of accommodation. Either bend over or get down low so your shoulders are about the same height as ours. I can’t tell you how many super awkward hugs I’ve had, particularly from men, as there is a fear to accommodate or offend. When no accommodation is made, it makes for a SUPER awkward hug, with no good place to put my face or hands. It may feel awkward for you to bend over, but I guarantee it’s more awkward for me if you don’t.
A common misconception is that we wear children’s clothing. Because achondroplasia affects mostly our arms and legs, we still have adult sized torsos. Adult shirts are the easiest to shop for, the only thing that usually needs adjusting is the long sleeves, which most times, we just roll or bunch them up. Pants on the other hand, need more adjusting. Because we have average sized torsos and waists, we buy average sized adult pants, which are usually WAY too long. I have learned how to sew, so I make all the alterations for our family and shorten our pants as needed.
We are roaming new territory as we buy clothes for Lily. We have found that short-sleeved kimono styled onesies or little rompers work the best for her. She has a larger head so very stretchy necks and buttons work the best.
Yes. And. No.
Finding a job isn’t hard. Being accepted for the job can often be a challenge and little people often have to work extra hard to prove themselves to employers. Achondroplasia does not affect intelligence at all, which is sometimes a misconception. I feel like there is sometimes fear of the unknown by employers and they don’t know how to make an accommodation, which is usually something quite simple, such as a stool - so employers will chose “more qualified” candidates for a position. Maybe it’s discrimination. Maybe it’s not. It’s hard to prove.
Some little people end up in entertainment gigs that can sometimes be quite demeaning. It’s understandable that some people have to settle in order to pay their rent, when employers don’t always give an equal chance. However, this can sometimes be a challenge to other little people, as it reinforces the ideas to professional employers that we aren’t to be taken seriously and are best at being Santa’s Helper.
I can’t answer for every little person but from my personal experience, this is what Jeremy and I prefer… Children are very observant. They notice differences and they often let you know very loudly when they notice someone different - as a parent it can be terrifying and really embarrassing. Often times in these situations, parents immediately hush their child, tell them to “shut-up”, redirect them to look away in a different direction, all with the best intention to teach their child not to be rude.
However, what it actually teaches is that differences are bad, they’re not to be looked at, to avoid them at all costs, and it causes more separation between “us” and “them.” So if your child sees us, encourage them to say hi, smile, wave, or ask us our names. They will point out the obvious, and that’s ok. We are prepared to handle it and answer their questions when they ask why we’re small. They usually need a simple answer and then go on to telling us about the toy they are buying or their Spiderman shoes. If your child is shy and afraid to say hi, you can take that moment to explain to your child that everyone is created different and our differences are what make us beautiful and unique. It’s ok if we overhear you. You won’t be the first parent/child conversation about us that we hear. We’re quite used to it. We’d much rather you take that opportunity to educate.
This shocks a lot of people that this is sometimes an issue. You’d be surprised at how often someone holds up their phones to take our photo, only for us to end up on their Instastory. They usually aren’t as discreet as they think they are being. If you are a photo taker, please put yourself in our shoes, and please stop taking our photos without our permission.
If you are a friend and you see this happen, tell the person taking photos to stop or create a human shield between us and them, so they can’t actually get their million dollar shot they are hoping for.
“Are you that one couple on TV? Are you that mom from that one show with the little people? Have you been on TLC?”
These questions we get asked a lot. It seems like it happens the most when we’re on vacation and not in our hometown of Redding, CA. We’re commonly mistaken for many different little people that are on various TV Shows. However, the answer is always no… That’s not us. We may look similar or have the same type of dwarfism, but we have never been on a reality tv show, though we’ve had many offers. I would say that monthly, producers from all over the world reach out, wanting to form a show around our family, see if we fit into the cast of a current reality show, or inquire about possibly doing a documentary feature on our family. So far we have said ‘No’ to all of them because we haven’t been willing to compromise our family values. We feel like there hasn’t been a proposal where we could stay true to who we genuinely are as a family. From my experience, it seems that one person’s interactions with a little person, dramatically impact how they feel about all other little people, as the exposure is often very limited. I feel like I carry some level of responsibility to make sure I portray the dwarfism community well. Perhaps one day we will say ‘yes,’ to a show proposal, when the timing is right and we know that our story wants to be told from a place of love vs exploitation. I would never want to sacrifice who I am as a mom and role model, just for a small ounce of fame.
If we have missed any question that you are still curious about, please don’t hesitate to ask us on our Contact Page.