Most Common Comments


This Friday, ABC’s 20/20 will do an update on Sierra and Sienna and there are always a lot of comments that accompany an article or media coverage about them.  Some comments are nice and others are not.  So, I thought I’d answer a few of the common questions before it airs.

Q: What about the Roloff twins?
A: Yes, the Roloff twins are twins where one is a Dwarf; however, Sierra and Sienna are twins where one is a Primordial Dwarf.  So, we’re talking about different forms of Dwarfism.

Q: How is Primordial Dwarfism (PD) different from other forms of Dwarfism?
A: Little is know about Primordial Dwarfism compared to other forms.  It is a very rare form of Dwarfism.  It is estimated that there are between 100 – 200 PDs in the entire world.  What we do know is that each form of Primordial Dwarfism seems to have its own characteristics and its own medical concerns.  PDs are also different from other forms in that they’re proportionate similarly to that of an average height person–they’re just smaller.

Q: What form of Primordial Dwarfism does Sienna have?
A:  She doesn’t fit into any of the currently identified forms of Primordial Dwarfism.  Doctors believe she, among other PDs, have a yet unidentified form.  DNA research is currently being done to identify her form of Primordial Dwarfism.

Q: Why doesn’t Sienna look like a Primordial Dwarf?
A: Primordial Dwarfism is such a complex form of dwarfism.  While some people with PD have similar features, there are several that do not.  Sienna is one of the taller PDs, but there are others who are taller than she is.  A few other things in Sienna’s life are attributed to being why Sienna looks/sounds the way she does.  For instance, many PDs have very high-pitched voices.  Sienna was on Oxygen for over a year.  This could be the reason why her voice is lower.  Also, she broke her nose when she was about 3 years old.  This could be a reason why her nose looks different from other PDs.

Q: Were she and her twin a result of fertility treatments?
A:  No.

Q: How can a dwarf have an identical twin?
A: “Identical” is a misleading term.  The more accurate word is “monozygotic”.  This means that one egg was fertilized and then split.   The timing of when the egg splits can determine just how similar or different twins are.  Here’s what Wikipedia says:

Despite being genetically very similar, monozygotic twins are not genetically exactly the same. A study of 92 pairs of monozygotic twins, carried out in November 2012,[27] provided evidence that monozygotic twins acquire hundreds of genetic differences very early in fetal development, due to mutations (or copy errors) taking place in the DNA of each twin after the splitting of the embryo. It is estimated that, on average, a set of monozygotic twins will have about 360 genetic differences that occurred very early in fetal development. These genetic differences that occur very early in fetal development will be present in nearly every cell in the body. Genetic differences due to mutations can also occur later in life, but those that occur at a later stage will be present in a much smaller proportion of body cells.

Primordial Dwarfism is a genetic mutation.  This mutation isn’t 100% understood either; this is why doctors and scientists are still looking for answers.

I hope this helps clear up some of the common confusions. 🙂

I also hope you enjoy the show on Friday and see it for what it’s meant to be–a celebration of Sienna knowing that she’s different, but not letting that stop her from having big dreams.

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Surgery Update


The surgery went well.  It was longer than expected, but a success nonetheless.

When we visited Sienna in the recovery room and she finally woke up, her first words were, “I’m hungry.”  Haha  Definitely a good sign!

She’s resting comfortably at home now. (Surprising how fast they send you home from the hospital now!)  And she enjoyed all the visitors she has had today.  Her brother even brought her a frozen treat! 🙂

Surgery


Sienna has surgery tomorrow.  She wasn’t nervous until today.  I think once I told her about not being able to eat after Midnight it sunk in that she was having surgery.

They’ll be repairing the opening where her G-Button was.  It could either be a fast surgery or a longer one.  They won’t know until they get in there.

Prayers appreciated! 🙂

Offensive Leprechaun Contest?


This weekend my husband and I were out and about around town and came across a promotion a local business was having for St. Patty’s Day.  It was a “Best Leprechaun” contest.

My husband and I started to chuckle and thought, “Sinny could enter and she’d be a shoe-in!” (In case you don’t know, our daughter Sienna, whom we call Sinny, is a Primordial Dwarf.)

After chuckling for a bit longer and reminiscing about how she dressed up as a leprechaun for Halloween several years ago, we got into a conversation about whether or not this sort of contest was offensive.  BTW, she picked that costume out by herself and was adorable.

Part of our conversation included a discussion about how easily some people are offended.  We feel like many times people are too easily offended as if they’re looking to be offended.  If you listen to the world with “ready to be offended” ears, you’re going to be offended and life will not be as enjoyable for you.

In our family, we are not easily offended. In fact, when we were interviewed by Jay Schadler for a feature on 20/20, he discussed with us how we have a very “honest way of approaching” my daughter’s medical conditions; so honest in fact, some people are shocked with it.  “Life is what it is,” was my response. You have to deal with it as positively as you can and not take yourself too seriously.  We feel like for most part, people don’t say things out of hate or disrespect. We have found that most often people don’t actually understand what they’re saying and don’t understand that it could be hurtful.

Let’s take a common phrase regarding “the short bus.”  This is a phrase I don’t like and while I don’t like it, I have found that most people haven’t given much thought to why they actually say that phrase and that it could be hurtful.  People use this phrase out of ignorance. Ignorance is what we should focus on rather than assuming people are hateful.

So, next time you hear an offensive term, perhaps strike up a friendly conversation with that person about why they use that term and try to educate them on how it could be hurtful. They may not actually know and you may find that they did not have malicious intentions behind their words.  As humans we don’t often like to be told what we can and cannot say, but by communicating with others the potential hurt of particular words/phrases, perhaps they’ll come to their own understanding and choose to refrain from using such words and phrases.

Yes, some people still say/do things out of hate, but we need to take it upon ourselves to decipher the difference between ignorant speech and hateful speech and, in both cases, strive to educate.

When dealing with people who still speak out of hate, you can do your best to educate them, but cannot control their actions.  Yes, words CAN hurt, but the words you tell yourself are the most important.  You are wonderfully created!

Now go give yourself a pep talk and a hug! 🙂