Find the original episode here Katherine and Jeff: Ellis-Van Creveld syndrome

Living One Day at a Time

The Doctors were Wrong Twice

Arabella, Katherine and Jeff’s first daughter, was originally diagnosed in utero with a lethal form of skeletal dysplasia.  Katherine recalls, “We were strongly encouraged to terminate the pregnancy. We were told that no other parents who were given this diagnosis had carried to term.” After telling the doctors no, they returned for a followup appointment a few weeks later.

Bella was then re-diagnosed with a different form of dwarfism, also lethal, as well as a heart defect.  However, the doctors were wrong again! After Bella was born, she was diagnosed with Ellis-Van Creveld or EVC which is extremely rare.  

“She Really is just the Picture of Best-Case Scenario for EVC”

“She is now almost 3 years old and she has had her heart repair surgery. Like most things that Bella has gone through, she excelled through that surgery and excelled through the recovery. She was winning hearts marching the halls of the hospital. Within a couple days of that surgery.” said Katherine. 

Katherine continued saying “But her heart’s repaired, her lungs look great and she’s hitting all of her milestones either on time or early. She really is just a picture of best case scenario for EVC…  she brings so much laughter into our lives she’s a little spit fire. she’s 100 percent whatever she feels whatever she does she’s always at 100 percent.”

“No, We are not Going to do That.”

When Katherine and Jeff were going to have another baby, they were given an option to do IVF.  The genetic counselor would test the embryos to see if they had EVC and only implant those that don’t.  

Jeff said the following,  “Given the blessing that Bella has been in our life we weren’t afraid, we knew the risk existed. But what is the risk? If it’s the risk of having another Bella we will take that! We love Bella. It is our opinion that Bella’s perfect. We wouldn’t trade Bella for a child that doesn’t have EVC simply because of the diagnosis, so we said “no we are not going to do that.”

Another EVC Diagnosis

Knowing what a joy Bella has been in their life, Katherine and Jeff decided to have another baby.  They knew there was a chance their second child could be born with EVC as well. They waited patiently for the 19 week ultrasound.  Katherine recalls “As soon as the measurements popped up on the screen for the arm and leg measurements, we knew that child had EVC.  It was a really emotional appointment with the ultrasound tech.”

“The tech was crying at the end of the appointment and were crying too.  We told her it’s okay, we have hope and we’ve seen great things happen so it’s not without hope.” Katherine continued saying. 

What is EVC?

When asked to describe EVC Katherine had this to say about it, “Ellis Van Creveld primarily affects bone growth..people with EVC are little people and they will always be small…They have an extra digit in their hands..as well as heart defects.”

She also said, “The reason there is a high lethality to it is due to the bone growth in of the rib cage.  If the rib cage doesn’t grow large enough to have sufficient lunch tissue to support life.”

Advice for Other Parents

Jeff gave great advice for other parents facing a lethal diagnosis. “My advice would let it play out, let God do his work…if somebody else has a diagnosis out there where the rib cage doesn’t look large enough to support life at a younger age, just recognize that it can grow and does grow.  At least in our case it did.”

One Day at a Time

With surgeries on their horizon, Katherine and Jeff try not to get too overwhelmed.  Katherine stated “I try no to live too much in the future because if I think about how i’m going to handle all of the situations that are going to present themselves I get overwhelmed…it’s so easy to get worked up and think this is impossible I can’t do it.  But what we’ve seen time and time again is you just do it. It works out and you figure it out.

“It’s usually not as hard as you imagine it’s going to be..there’s going to be certain challenges and changes to life and life isn’t going to look the same but you’re in for an awesome ride getting to watch these kids fight and surpass challenges and difficulties.  Seeing them just so full of life is such an awesome privilege you’re not going to regret giving them the chance to fight.”

The post Katherine and Jeff: Ellis-Van Creveld Syndrome- Follow Up appeared first on Orangesocks.org.

Little but Mighty: A Story of Dwarfism

Planning for the Baby

Rebekah and Chris knew they had a chance of their children having achondroplasia or dwarfism like them.  When Rebekah was pregnant with her second child they did an amniocentesis. This is a genetic test done using the amniotic fluid to screen for developmental abnormalities in utero. 

Rebekah said, “I don’t like surprises; I have to be prepared..we would have taken any type of diagnoses we got as we were going to take this pregnancy all the way, but we just wanted to prepare because I didn’t want the unknowns.”

Getting a Diagnosis

The amniocentesis showed that their baby Ella did have achondroplasia like Rebekah and Chris. Chris shared his first reaction, “I was scared to tell you the truth, because during my life, I was small..I don’t know why, but I thought that Ella might get made fun of a lot and stuff like that.”

Chris had some past experiences in high school and junior high that made him afraid for Ella.  Rebekah shared how her parents helped her in her school aged years. “What prepared me the best is both of our parents who were involved with other parents who have kids with dwarfism.  Little people of America is a great organization, and they got us involved in that, so we were able to make friends with our peers who were people with dwarfism our age.”

A Child with Dwarfism Draws Attention

Rebekah shared what challenges they have faced with Ella who is five, “When Chris and I were walking down the street with a baby stroller, I would put the curtain down, because when people saw us, they would turn around and look in because they wanted to see the child.” As parents, they felt like they were on display.

She then shared what would have been helpful in that situation, “If they did have questions and if they did come up and start asking questions about us, wanting to know about our dwarfism and who we are, of course we’d show you the baby.” 

Differences in Children

Rebekah shared what is great about having a child with dwarfism. Rebekah said, “The good thing about it that they don’t walk until around two years old, and by the time they are that age they know..what they cant touch.” 

“It has been nice that we didn’t have to baby-proof at all.  That was the stark difference between our son and her; I didn’t have to baby-proof anything.” Rebekah added.

Advice for Others

“Find as much information as possible as you can and seek out other people who have the diagnosis, parents as well as adults who have the diagnosis; that’s going to be your best bet because you’re able to see where they are and how they got there and what to expect.” Rebekah stated.  

She also gave great advice for the siblings of someone who has dwarfism, “Just seek out Little People of America and get your child and your family to be a part of that organization.  My average-sized brothers and sisters have benefited from that too..my siblings were able to make friends with other siblings and other little people, and they were able to share their stories and how their siblings with dwarfism get all the attention.”

The post Rebekah and Chris: Achondroplasia (Dwarfism) appeared first on Orangesocks.org.

Finding Happiness and Joy

The Unexpected

For Gwen and her husband, there was no cause for concern while starting their family.  They had one boy, born typically. Gwen’s tests and scans all came back normal during her second pregnancy as well.  However, when Claire was born, it was apparent something was wrong.

Gwen recalls, “There was no reason to believe anything was going to happen.  I had a pretty uneventful labor, and she was born, and instantly everyone freaked out…they were pretty concerned and called in all the specialists to give her a thorough exam.”

“It Happened Again”

Doctors were unable to find the cause of Claire’s microcephaly and assured Gwen and her husband that there was a 25% chance of it happening again.  Confident it wouldn’t happen again, they got pregnant. 

At first all of the scans came back normal.  It wasn’t until she was 22 weeks pregnant there started being concerns.  When Gwen was 26 weeks along, they confirmed microcephaly for Lola, her unborn child.  Claire had this to say about it, “I don’t know if I’ve cried as much in my whole life as I did those 24 hours after Lola was diagnosed.  It just felt so unfair to have to go through it again..we really, truly thought we had a 75% chance or greater that everything would be fine.”

Choosing Life

Even though her obstetrician didn’t push for termination of her pregnancy, he encouraged Gwen to look at all her options.  Gwen recalled what happened, “I just remember going back to my OB who said, ‘you guys have been through an awful lot. Look Gwen, you have options, and I’m not going to judge you guys whichever option you take, but I would encourage you to check out every option.’…and I did exactly what he said.”

Gwen did her research.  She talked with people who had been through similar situations, visited websites, and read testimonials.  She said the following, “Who am I to play God? I was given this child for a reason; why am I to change this path?”

She chose life! A decision to this day she would choose over and over again.

Finding the Reason

It had taken years to find the reason behind Claire and Lola’s microcephaly.  After sending blood into different research hospitals, they finally had a definitive answer.  Her daughters have Asparagine Synthetase Deficiency or ASNS.  

Since getting a diagnosis, Gwen has created a Facebook page.  This page has helped other parents connect and find support in each other. Gwen had this to say, “It has been really neat to connect with these other families and see the similarities..How nice is it to know another family who understands what we are going through.”

Sleep is Hard

When asked what some of the challenges for Claire and Lola are Gwen mentioned a few things.  The first being the ability to control the girls’ seizures and the other is sleep. “I can’t say that nighttime is normal because they don’t sleep steadily.” Gwen said.  Lola requires constant supervision while sleeping. Usually there is a nurse who stays with her to help monitor her sleep and seizure activity. 

“Typically Atypical”  Life with Medically Complex Children

“There is nothing typical about any of my days, nor are any two days the same..the tricky part is we have PT, OT, speak technology and we have a vision therapist who comes and two teachers who come, so that’s like seven people who are trying to come Monday-Friday every single day.”

“We try to squeeze stuff in for our son.  A lot of times in the evenings he’ll have basketball games or practices, or we go with him to the gym..we try to have as much normalcy for him as we can.  We’ve always tried to do that. We are a pretty close knit family; we just like spending time together.” Gwen said.

“Life is Special and Perfect and Wonderful Exactly the Way it Is”

Gwen had some great advice when asked what she would say to a parent facing a similar diagnosis. “It’s scary as hell, I’m not gonna lie…I wish someone would have told me that back then, that I could still be happy, and that I could still find joy in the life that I had”

“I just wish that somebody had told me in the beginning..that life is special and perfect and wonderful exactly the way it is. Having these kids and thinking outside the box and not doing things exactly the way that you would with a typical child is basically upping your mommy game; it’s making you a better person, making you stronger, uniting your family… I just really want people to know that they can do it and that they just need to believe and love and find joy in every single day.”

The post Gwen: Asparagine Synthetase Deficiency appeared first on Orangesocks.org.

Fear Turns into Gratitude

Unexpected news

Throughout her pregnancy, Kelly, never had any indication that Everett would be born different.  She said, “We had only one ultrasound right around the 20-week mark, and everything seemed to be normal..nothing was ever mentioned about anything proportion-wise with his body.”

It wasn’t until they were packed and ready to take Everett home that a pediatrician mentioned that something was different with Everett.  Kelly recalled, “She first proposed skeletal dysplasia, and then she said achondroplasia. I had never even heard that word before.”

They went to their regular pediatrician who decided to do blood work.  A week later, they received the diagnosis of achondroplasia. Zac, Everett’s dad, said, “It was just really heavy.  Everything kind of stopped. At age 37 and this being my first son I’d waited my whole life for, I envisioned this child to be perfect and beautiful and joyous.”

Fearing for the future

Growing up, life was challenging for both Kelly and Zac.  They were both teased and ridiculed throughout their elementary aged years.  This immediately brought fear into their minds. They worried for what life would look like for Everett with his diagnosis.  Zac said, “I did not want our child’s life to be harder than what mine had been. I’m what the world would consider a person of average height and average intelligence, and life has been hard enough just as a regular citizen of the world”

As a young child, Kelly moved around a lot and said, “..my mind went to that place where the world can be very cold and hard. So i immediately grieved.  I thought at that moment that life was going to be that much harder, and that was challenging.”

Turning towards God in moments of despair

After initially grieving the loss of the life they thought they would have for Everett, Kelly said, “We immediately turned to God in prayer..there was a lot to work through in prayer with God as to what this looks like.”

Zac has been able to find joy in caring for Everett.  Zac said, “It I didn’t know God or know what a relationship with Him looks like or what He said about His plan for us, that the plan is not to harm us but to give us hope and future..I’m not entirely sure how i would have managed the first six months to a year with Everett.”

Looking at your life in a different way

There have been a few instances that have helped Zac learn to look at his life in a different way.  He shared, “I remember on several occasions sitting around the dinner table with other couples who were talking about their sons and how good they are at athletics.  Athletics was a great way for me to connect with my grandfather and my dad.”

He continued by saying,  “I’m realizing that my son is going to be interested in other things.  I have no idea at this point if it’s coding or video games; it will be different. It’s not any less of a life or any less of a level of enjoyment and joy; it just comes packaged differently.”

The impact one child can have

Everett was the first grandchild born on both sides of their families.  Kelly said, “He has been long-awaited, so when he came, everyone was overjoyed..our family has been extremely supportive, both sets of grandparents..Everett was welcomed in by aunts and uncles and family who were extremely loving, supportive, and in awe of him.”

Their families were cautious at first hearing Everett’s diagnosis.  Zac said, “Once we were given the green light to go about our daily lives..I think our entire families just kind of breathed a sigh of relief. From that point, it really is just making sure Everett’s identity isn’t founded in his diagnosis and that he is recognized as a normal person.” 

Zac jokingly said, “Everett has more followers on Instagram than I did for the first five years that I was on there.  I mean it just has been incredible.”

Everything happens for a reason

“My final thought would be that nothing in an accident.  I don’t believe in accidents. I think that God ordains our steps, and I think everything He makes is beautifully and wonderfully made.” Kelly said.  She said that she knows Everett came into their lives when they needed it most.  

Zac had one last thing to add.  He said, “I would definitely encourage those who are just swimming in it and don’t know where to seek counsel, that they seek that from a community of people who have received the same diagnosis..it definitely calms the waters. It will begin to transform our mind into one of gratitude..you just have to stay faithful and committed to raising your own human.”

The post Kelly and Zac: Achondroplasia appeared first on Orangesocks.org.

Carrying on despite two fatal diagnoses 

Fatal Misdiagnosis

At their 18 week ultrasound, Katherine and Jeff were expecting to find out the gender of their baby.  When the ultrasound tech got quiet, they knew something was wrong. Katherine recalls, “I noticed that the person scanning kept going back to Bella’s long bones and her arm and her legs multiple times.” Her doctor decided to draw her blood and screen for the common trisomy disorders.  When those came back as negative they were referred to another hospital.

“The doctor’s first sentence, which I’ll never forget, was, ‘Your baby is not doing very well.’..the doctor went on to explain that not only were her arms and her legs measuring shorter than average, but her thoracic cavity and rib cage was much smaller as well. This had led them to a diagnosis of what’s called thanatophoric dysplasia, which is a form of dwarfism, but it’s a lethal form of dwarfism.”  Katherine added.

Choosing not to terminate despite being encouraged to

Despite the doctor’s heavy influence, Katherine and Jeff decided to continue with the pregnancy.  Katherine said, “..both of us agreed that there was no chance that we wanted to terminate this. We knew that we might not get much time with her, but we wanted to give her any chance she had.  We didn’t choose the day she was conceived, and we refused to choose the day that she would die.”

To everyone’s surprise, during another ultrasound, there was growth in Arabella’s rib cage.  Something that shouldn’t be happening with her diagnosis. A month later, more growth. This prompted doctors to re-evaluate the previous diagnosis.

Short rib-polydactyly 

With an incorrect previous diagnosis, doctors were struggling to figure out which form of dwarfism Arabella had.  Finally, they came up with another diagnosis, Short rib-polydactyly syndrome.

 Katherine recalled, “They thought they saw an extra finder and an extra toe on the ultrasound..it was at this point they told us that Short Rib Polydactyly syndrome once again is 100% lethal.”

Misdiagnosis brought confidence

Jeff had this to say about the doctors’ misdiagnosis, “The very fact that they had misdiagnosed the first go-round gave us some confidence that they may have misdiagnosed the second, so while it was hard and we had not scientific basis for hope at that point, we had hope.” 

“They weren’t bringing her back to die”

Prior to the birth of Arabella, Jeff and Katherine were prepped on three possible scenarios of how the delivery might go; all three were grim.  Katherine shared, “My husband has researched burial plots, and I researched and found a foundation that send burial gowns made out of old wedding dresses, and though we had hope, we were also prepared for the possibility we would not bring our daughter home.” 

Katherine described the birth of Arabella as, “She was born on a Sunday around 12:30, screaming her head off, which I knew immediately was a good sign..they took her right away for assessment..I asked if someone could go please check on my baby and tell me how she’s doing.  They sent someone over to the assessment room and she came back a few minutes later and said, ‘Your daughter scored nines on her APGAR. She’s doing great, and they are going to bring her back to you in a couple of minutes.’ 

They weren’t bringing her back to die; they were bringing her back a very pink, very much breathing beautiful baby girl.”

A second misdiagnosis

After Arabella was brought back to Katherine, she never left her side again in the hospital.  They were sent home after three days with no breathing assistance and no monitoring technology.  A few months after she was born, they met with a genetics specialist who diagnosed Arabella with Ellis-Van Creveld or EVC.

Both Jeff and Katherine carry the recessive gene that contributes to EVC.  They have a one in four chance of having a child with EVC. Katherine and Jeff are expecting another child who also has EVC.

A final word

When asked to share her final thoughts, Katherine had this to say, “My final word is give your baby a chance.  We wouldn’t trade what we have been through for 10 healthy babies…surround yourself with good community and sit back and watch what the Lord might do.  

She continued, “It can be pretty incredible to see.  It’ll give you a perspective on life that you wouldn’t want to trade for anything else.”

The post Katherine and Jeff: Ellis-Van Creveld syndrome appeared first on Orangesocks.org.

Devastation Turns to Happiness and Joy 

Blowing off doctor’s findings

With her first pregnancy, Leslie was told that her son was measuring really small.  They were concerned that he had IUGR or intrauterine growth restriction. He was monitored very closely and when he was born, they said, “Oh, we were wrong. He is perfectly fine and healthy.”

During the pregnancy of Lilah, Leslie was told the same thing.  She said, “..they started telling me the same thing around the same time, ‘She’s looking small, your measurements are a little off, you’re measuring small’..and so forth, and I literally just blew it off.

Finding out your daughter has achondroplasia

They recommended that she do some stress tests and some additional ultrasounds.  In the meantime, they moved and switched doctors. She said, “So we went to my new doctor, so we did the ultrasound and the ultrasound tech took a very long time..I, at the time, was just really annoyed because my two-year-old was running around and she was taking a really long time.”

When her ultrasound was finished, her doctor sat her down, placed a box of tissues near her and told her, “Leslie, I think your daughter is going to be born with dwarfism.”  Knowing her history with her first pregnancy. She tried to explain that he was wrong. Mid-sentence he told her, “I’m 99% sure.”

Fear of the unknown

“I really was afraid because I just didn’t know much about it.  It was a huge unknown for me, and fear of the unknown, you know there’s always questions and you worry about what you don’t know.”  Leslie said. Leslie and her husband started wondering about what Lilah’s life would look like.  

They were concerned about her quality of life, if she would survive birth, or if she would get bullied.  She said, “..the biggest emotion I had right away was just fear. I was really scared, it was really just a dark day for us, we cried a lot.  We were really emotional and just frightened for our daughter.”

Miracles surrounding birth

The morning of her planned C-section it was the first snowfall of the year, Leslie said, “..so we woke up to all of this snow, and it was just like everyone’s blessing being poured down on us.  It was so surreal.” The delivery of Lilah went better than anticipated. They thought Lilah was going to be born under five pounds and would have to spend time in the NICU. Lilah was born weighing almost six pounds and was able to avoid a NICU stay.  

While recalling the details of her birth to her mom, Leslie said, “You know mom, I knew everything was going to be okay when I saw all of the nurses smiling, they were all smiling..That day we were very blessed and there were so many more souls in that room than just those nurses, and it was an incredible day.”

Achondroplasia

There are 200 different forms of dwarfism, achondroplasia is a genetic condition that affects the growth of the bone in the cartilage of the growth plate.  Some of the symptoms related to achondroplasia are: shortened arms and legs, large head size, bowed lower legs, flat feet, poor muscle tone and loose joints, and delayed developmental milestones.

An official diagnosis for achondroplasia can only be done by genetic testing.  During her pregnancy, Leslie opted out for an amniocentesis. When Lilah was born, she was tested and officially diagnosed with achondroplasia.

Fear of what other people thought

In the four years that Lilah has been alive, Leslie described the hardest part of taking care of her was the six weeks before she was born.  Both her husband and her feared the social implications of having a child with a disability would bring. They worried that people would either judge them or feel sorry for them.

She said, “..that was the hardest process of shedding those fears and getting rid of all the anxiety that came along with having a child with this diagnosis..and so we went from being discouraged and frustrated and asking, ‘Why us?’..to a place of, ‘Wow, like we feel honored that God chose us to get to walk this journey.’”

Story is shared far and wide

Before Lilah was born, Leslie started a blog to share their journey.  Through this blog Leslie was able to be honest and share the difficulties in coming to terms with Lilah’s diagnosis.  Since sharing their journey, Leslie said, “..it was unbelievable the support and the encouragement, and just this huge village formed around us that I didn’t know we would need, but we would desperately need.”

In sharing her story, Leslie has been asked several times from other moms with a similar diagnosis.  She said, “I first ask about the diagnosis.” This determines what type of advice Leslie will give. If it is a lethal form of dwarfism, she helps the moms with ideas to preserve the memories of their child and just enjoy the pregnancy and find peace with the diagnosis.  If the diagnosis is similar to Lilia’s, she said, “I’m thrilled because the prognosis and outlook is wonderful, so I’m happy for them..I talk a lot about hope and just how mommas ahead of me in this journey told me that everything is going to be okay.”

The post Leslie: Achondroplasia appeared first on Orangesocks.org.

Loving Your Child No Matter What

Diagnosis is Rare and Fatal

“At my 20-week ultrasound, we found out Claire was a girl, and then they said that her arms were measuring a little shorter and suggested we come in for a follow-up appointment four weeks later.”  Katie said. Not thinking it was a big deal, Kate and Nathan were blindsided by what they were told at the follow-up appointment.

Their doctor told them, “I’m really sorry, but she definitely has some form of skeletal dysplasia which is dwarfism.”  The doctor then proceeded to give them a print out about it and basically sent them on their way. 

“Everything is going to be different”

After receiving the diagnosis, Nathan described how he felt, saying, “It was a pretty big blow.  It was more just shock there for a little while, and then a lot of tears, then kind of being together just trying to understand the paradigm shift of a sudden knowing that everything was going to be different.” 

Having similar thoughts to Nathan, Katie explained, “..this is not what I had planned, this is not what I expected. ‘What did I do?’ goes through your mind..It’s totally irrational, but you go through those thoughts..It’s just really scary because we’ve never gone through anything like that before.”

Rhizomelic chondrodysplasia punctata 

Katie and Nathan received little to no information about their daughters’ condition.  Katie felt like they were left to do the research on their own. After turning to the internet, Katie said, “Then, of course, you spend hours and hours looking up things online, and you’re just kind of lost in this big haze; you don’t know what’s going on.”

RCDP is a condition that affects typical development of different parts of the body.  The major symptoms of the disorder include skeletal abnormalities, distinctive facial features, intellectual disability, and respiratory problems.  Something that is common with this disorder is people often form joint deformities that make the joints stiff and painful.  

Nathan shared a sobering statement, “40% of the children with her condition don’t make it to their first year; very few make it to the age of 10.”  Katie added, “A child who lived 5 years in considered a long-term survivor.”

A typical day for someone with RCDP

Due to her medically complex condition, Katie, Claire, and Nathan are home-bound.  Katie shared that most of her day includes feeding, suctioning, physical therapy, laundry, paying bills, cooking and cleaning.  “I feel like I’m cleaning a lot because with a medically fragile child, you just have to make sure our house is clean because you don’t want to bring in any germs or anything.” said Katie.

Even though discussing her day made Katie realize how repetitive it can be, she said, “I love being with her.”  She doesn’t mind taking care of Claire and she “would take care of her 100 more years.”  

Joys despite a fatal diagnosis

When asked to share his joys Nathan said, “That’s way easy.  It’s just holding her and trying to get her to smile or laugh.  In the last few months, she is much more quick to give a smile than she was before, so playing with her is definitely the best.” 

Knowing their days are numbered, Katie said, “..just seeing the small things she does is monumental and brings you so much happiness.”

Realizing family is all that matters

When Claire was first born, Katie’s sister shared a thought with her.  She said that seeing Claire made her realize how much things don’t matter..“just that Instagram doesn’t matter, Facebook doesn’t matter, and it doesn’t matter that my house isn’t perfectly clean.  She just realized what actually makes you happy in life.” Katie shared.  

Advice to parents with a fatal diagnosis

Knowing your child is going to die is a very hard thing to come to terms with.  Nathan said he would tell other parents in a similar situation, “It’s going to be hard, but it’s going to be okay.  You’ll have a lot of hardships, but there are going to be so many joys so enjoy what you have now, and it will all work out, just keep going.”

Claire thought that when she had a child with a disability that’s all she would be able to see.  She said, “I wish I could go back and tell myself that my child has a disability and that’s it. You’ll forget some days because Claire is Claire; it doesn’t matter.  I wish I could go back and tell myself that or tell someone who has the same condition that you are going to have such a great time; they will just be your whole world.”

The post Katie and Nathan: Rhizomelic Chondrodysplasia Punctata, or RCDP appeared first on Orangesocks.org.