Raising Leah

We would like to thank the creator/s of the blog “Raising Leah”. While researching for this project, we were happy to find this blog about Leah, a little girl with achondroplasia. Reading this blog really helped us understand achondroplasia, and helped us make our story more realistic. Learning about Leah’s experiences was very interesting, and  we were able to make characters based on what we learned about Leah. Thanks for inspiring our blog and helping us with this project! If you are looking for a great blog about dealing with achondroplasia, visit Raising Leah!http://raisingleah.wordpress.com/

Leah

Dealing with Alison

Alison is already grown up! She's doing great!

Raising Alison has been great for us, so far! She’s a great kid, and we have been doing well. Having two parents with achondroplasia doesn’t seem to matter to Alison, and it doesn’t really matter to us either. It is a little tough for us to do some things that normal parents can do, such as putting Alison in her crib or get things from high shelves, but otherwise, we are being normal parents.

We are definitely glad that we decided to adopt Alison, and dealing with her has gotten easier by the day. When it comes time for Alison to learn about achondroplasia, we are sure she will take it well. One thing is certain: Alison will not be bullied for being a “dwarf” or “big head”, like us.We are so happy to have a child in our lives, even though she’s not blood related. I’m so glad she won’t have to go through having achondroplasia, and very glad we didn’t risk having a baby naturally. Alison is anything we could have ever wanted! If you have achondroplasia and are considering adopting a child, believe us, you will not regret it!

Hopefully check back in soon!

-Kaylee

Adopting Alison

When we first adopted Alison

We have just adopted a beautiful baby from Algonquin! Her name is Alison. She is so tiny and healthy. She cries every 30 minutes. Cody and I are tired, but we adore every yelp. I must say, it’d be good if she cut it out at night ! We love her so much and I know we’ll be great parents.

This was the best decision we ever made. I don’t regret one thing and I know she’ll grow up to be a beautiful, tall, kind child. We’re so happy! A kid at last. Wow. It hits me every time I say it. We’re actually parents. We’ll raise kids. It’s huge, something I think every parent feels.

Thanks for your support, everyone!

-Kaylee and Cody x 10

The Decision

As parents, we want the best for our child, and having to deal with Achondroplasia, I know what its like and I don’t want our child to go through that. I’m voting no on the having a child question, like the actual having a child. But I am all for adoption. This way we can pick a healthy child. And maybe when we are older, our child will be able to care for us. Cody is for the adoption as well.

Our final decision is to adopt. Although I would like to conceive a child naturally, we decided that it would be in our child’s favor to not have him/her.  Adopting is the best decision. It would be too risky to have child with our disease.

Can’t wait to share with you our new baby!

-Kaylee and Cody

Pre-Conclusion

To sum up what we’ve learned these past couple of weeks, Cody wants to have children as much as I do, but when we talked to different doctors together, the prospects of our child living beyond a few months don’t seem very good. Even if he/she did, their life still wouldn’t be lived to the absolute fullest. He doesn’t want to go through the pain of losing his baby, but I still want to have children. Even if we decided that we were going to go through with it, our baby would have a 75% chance of having Achondroplasia, or dwarfism, just like us.

The good parts about this are that we might be able to teach our child the ways to cope with being… different. We did build a house that was suited just for our needs, so it’s ready to let one more in, now that we’re comfortable in our new home. We wouldn’t have to spend any more money that we’re ready to spend, which, in Cody’s opinion, is a VERY good thing.

But we’re also worried about other problems. The medical difficulties that the child might be born with have expensive treatments. For example, the child might be born with fluid buildup in the brain. This would cause us to go the hospital often to get their brain drained, and that treatment is expensive. Also, when he/she learns to drive, we might have to get a car that fits our needs, and a car itself, without all of the adjustments, is really expensive.

I think we have finally reached our conclusion! Stay tuned!

-Kaylee

Doctor’s Report

We went to the doctor today and got the doctor’s report. This really opened our eyes to our disease. Here it is below.

Doctors’ Report

Anchondroplasia

Issued by: Dr. Sonja Grunfeld, MD   Dr. Bronte Foley, MD

Achondroplasia is a disorder of bone growth that is the most common form of dwarfism.

Symptoms:

• Enlarged head
• Prominent forehead
• Short fingers
• Short arms and legs (particularly short thighs and upper arms)
• Breathing problems
• Constant ear infections
• Obesity
• At an older age, back pain may develop
• No taller than 5 feet in height

Possible Complications:

•  Clubbed feet

• Fluid buildup in the brain

Causes:

This disorder is caused by the mutation of a gene (fibroblast growth factor receptor). This limits bone growth from cartilage. Most often, this is not inherited, but is the result of a mutation in the egg or sperm cell. Fathers older than 40 are at risk for fathering a child with achondroplasia.

Treatment:

Though there is no general treatment for achondroplasia, there are forms of therapy. Well-practiced pediatric care and monitoring of body and brain growth are essential. If desired, limb lengthening is available.

Cures:

There is no cure known for achondroplasia.

-Kaylee

Advice from the Genetic Counselor

Given to us by the genetic counselor. This shows the probability of our offspring.

So I guess our child has no chance. The genetic counselor said that if we wanted to conceive a child there would be more than a 75% chance of it having achondroplasia. Even worse, there would be a 25% chance of it receiving both genes for the disorder, meaning that it wouldn’t live beyond a few months. Although we both possess achondroplasia, there is a small 25% chance of our child not having it at all.

Unfortunately, there is no real treatment or cure for achondroplasia. The only treatment the genetic counselor knew of would be limb lengthening, and that just sounds painful. Neither of us would be brave enough to put ourselves through that and it doesn’t seem right to put a child through that pain. Along with the obvious disorder stated earlier, there are other possibilities of disorders that might accompany the achondroplasia. Of these disorders there might be brain fluid buildup, and the treatments for that are very expensive. We could afford it, but over time, the expenses would add up, and we would just be fighting fate in trying to keep our child alive.

So now the option that Kaylee and I are seriously considering is adoption. We both still want a child, but we haven’t decided how to go through the process of recieving a child in that manner.

We’ll keep you posted on the details!

-Cody and Kaylee

Chicago, Our Home

Bell School accepts students with all disorders, a great school for someone with Achodnroplasia.

After learning more about the disease and talking with experts, here are our feelings so far.

With achondroplasia comes many symptoms and disabilities. This requires a school with nurses willing to help our child get through everyday life.  A nurse’s help would be expensive and judging by the amount it costs, I don’t know if our budget will handle the expense well. We will need a doctor, and frequent therapy. Both of which are expensive treatment. As parents, we will need to be emotionally ready to have a child.
We live in the Lakeview district of Chicago, so help is not far if we need it. There is also Bell School, a school that is more than capable opportunities to take care of any child, whether it has achondoplasia or not.  Once our child, whether it is of our blood or adopted, gets out of elementary school, high school and college would be difficult for them. College, as expensive as it is, would be hard for selection because a college with the needs of our child in store. All in all, the cost of just one year of college would be at least $100,000

Also, the process of finding a job would be hard to do, even with out the prejudice that comes along with having a genetic disorder. Sadly, people don’t like to employ other people that are, well, different. This would make finding a job. It would be hard to get a house, car, and other need with out a job.
Emotionally would be very hard. It is sad to have to watch your child being made fun of just or the way they look. I don’t know if I would be able to go through that. It would put stress on us as the parents, trying to make your child succeed.

We are getting even closer to our final decision. Keep you posted!

-Cody

Adoption?

Cody and I are looking at adoption agencies. We still have not made up our minds whether to conceive or to adopt. But, to keep our options open, we are looking around for different adoption choices.
One option is to adopt fiom Veitnam, South Africa, Darfur or Hati. Another option is to find parents locally. Cody would like to adopt from Hati. Personally, I like the idea of adopting locally. Like I said, we are still considering having a blood child. After what we learned when we went to see our genetic counselor, we think it would be cruel to toy with a child’s life like that. You know,trying to conceive when there’s a 25% chance they won’t make it past a few days? It doesn’t seem like a very good idea, to have a baby, and then watch it die.

Still talking about it.

Until later,

-Kaylee

Growing Up With Achondroplasia

When I was a little girl. So cute:)

When Cody was a little boy.

If you didn’t read our first entry, I’ll just recap. My husband, Cody, and I both have achondroplasia. We want to have a child, but worry about our child coping with the disease, or even worse, passing down both genes for it. To get a sense of dealing with achondroplasia, we will share our personal experiences growing up with it.

Kaylee-

Growing up in the suburb of Algonquin was very hard for me. Kids my age would always assume I was 3 years younger than I actually was. Those assumptions fueled my frustration from the beginning. My mother and father did not have achondroplasia, which means my achondroplasia was a mutation (this is a very common way to get the disorder). Anyhow, I was constantly bullied for  being disproportional. Kids called me “dwarf” and “big head”. I would get so fed up that I would go and cry in the bathroom.

Growing older with this disease, got better, yet worse. People started treating me better when they matured, but it’s hard to be an adult with achondroplasia. First off, finding a job in Algonquin is pretty hard with my condition, so I decided to move to a big city with more opportunities: Chicago. I did have to pay a lot of money for a car fit for us, but it was worth it since both Cody and I need it. As of now, I’m a pretty successful graphic designer, and I am perfectly happy with having achondroplasia.

Cody-

Hey, Cody here. So, I guess Kaylee’s told you most about our situation. Just so all of you know, I do want to have kids. Really badly. I want the experience of fatherhood, but given our condition, we can’t really take that chance, or so Kaylee tells me.

So I guess you want to know about my life. I grew up in Boston, and I can’t imagine a better place to live. I could see the harbor across from my living room window. I grew up with that sight. Any REGULAR kid might have the time of their lives in that city, growing up on cheesecakes and the scent of sea salt in the air, two things to rejuvinate the energy of any kid.

But my experience was a much, much different from any REGUALR kid in Boston. Achondroplasia ruined my childhood, as if I could evan have the possibility of one. My mother always joked that I was born a twenty year old and became more middle-aged every year. None of the things that the other kids liked appealed to me, like video games and television shows. I had always known that I wanted to be an architect, and that’s what took over my social life. I would spend hours and hours pooring over blueprints that I wanted to be built.

High school and college passed in a blur. I became more and more aware of myself and what other people thought of me. But I was so anti-social that it didn’t really matter unless somebody decided to play a “joke” on ” the dwarf”. Believe me, if you think you were an outsider, it was nothing compared my high school social status. I was locked into my locker for whole periods of time, and…. a lot more. I can’t tell you how relieved I was to go to college.

College was the best experience of my life, so far. I went to the Yale Architecture School. I had incredible professors, with one distinct difference from my high school teachers: they didn’t put me down for what I was on the outside. I never really knew how much I could fit into my brain until I really applied myself in my classes. I passed with flying colors, and the process of finding a job was not hard, even with all of the prejudice against “different” people.

So after explaining every little detail in my existance, I guess I should get off and leave some more for next time.

We’ll be Back!!!

-Kaylee and Cody