[Congenital diseases] It heartbreaking to see my young self in her
My daughter Yu-Na and I are born with a rare disease called hypochondroplasia. But luckily with the help of the SBS TV program “The most beautiful journey in the world”, Yu-Na was able to have the surgery. So she was able to meet Professor Song and be operated right away. The operated area was the calf below the knee. Right now, we have already lengthened about 10 cm after the surgery.
She received the surgery in April 19, 2010. She was 12 years old and was in 5th grade. She was a rather timid girl but was interested in physical appearance.
Because I already had hypochondroplasia, I was worried when I first had her. This is a disease that has a 50% chance of being inherited to the next generation. I was hoping that she wouldn’t get those genes, so I had her. I couldn’t feel that she was hypochonroplasiac at first, but as she became 2, 3 years old, she started showing the typical features of hypochondroplasia. Her mental or cognitive development was quite faster than other kids, but I noticed that her bone development was slower than others. “Oh, she inherited the disease” I noticed, and I felt guilty.
It was heartbreaking to see her go through the same thing that I had to go through when I was little. It was unbearable to see her get stared at by people around her. Other kids didn’t play with her just because of the fact that she was short, and teased her, calling her names like dwarf, peanut, and shorty. Especially the boy would just hit her and run away.
Yu-Na would come home and burst into tears, telling me about all the things other kids did to her. She always told me that she didn’t want to go to school and didn’t want to see any of her classmates. Because of that stress, she even started showing other odd habits. Yu-Na, who had no problem with bedwetting since 1 year old, started wetting her bed again frequently. To correct this, I even made her wake up several times in the middle of the night to make her go to the bathroom. She was able to recover from bedwetting after a few years.
My mother, after seeing both me and my daughter with such condition, suggested that Yu-Na gets a surgery. One day she went to a rehabilitation clinic and bought leg braces for her. The frame did somewhat correct the bowing, but it was too uncomfortable for a little child. She had it on for about a year which helped with correction in some extent, but it had nothing to do with leg lengthening.
Yu-Na was stressed because of her height every single day. Everyone in the family was concerned about how to help Yu-Na grow taller. When she was in 3rd grade in elementary school, the medical head of the rehabilitation center we had been going to knew Yu-Na’s situation and gave our contact information to the broadcasting company. We got a chance to appear on a special winter show that was made to financially help out people in hard situations. Thankfully, we got help of about 5,000,000 won.
At that time we knew nothing about the Ilizarov surgery. We had our hopes on hormone therapy and so she got injections for 1 year. But actually growth hormone therapies don’t show that much effect to hypochondria patients. But I think her physical growth sped up rather than growing taller because of growth hormone. Her breast development started when she was in 4th grade and her first menstruation started at the age of 11.
The first time I found out about my and Yu-Na’s exact diagnosis was when I met Professor Song at KUMC. I knew about the name of the disease but this time I learned the exact diagnosis after various genetic tests. When we were going through the tests, I was desperately hoping that Yu-Na wouldn’t have the same diagnosis as mine. But my father, my daughter, and I were all given the definite diagnosis of hypochondroplasia.
I was not sure whether it was because she was still young, or because she was used to living with short height, but Yu-Na seemed to be indifferent about the diagnosis. But other family members were depressed, feeling hurt once again.
We heard the result after the first encounter with Professor Song. He told us that with the Ilizarov surgery, we could grow 10cm taller and our bowed legs could be corrected. Yu-Na was very enlightened by this news and said that she absolutely wanted the surgery. He showed the x-rays of the patients he had operated so far, and told us that calves, thighs, and even arms could be lengthened. My eyes got teary after the thought of Yu-Na getting taller.
But I also told Yu-Na about the complications and the dangers that come with the surgery. I didn’t want her to regret when she got older.
With no hesitation, Yu-Na said she wanted to have the surgery as quick as possible, despite me telling her about all the possible side effects. Because she was so firm on her decision we got a surgery date on the first day we went to the hospital. She was looking forward to the surgery day by day and told all her friends about it.
Her surgery was on April 19th. 3 days prior to the surgery, she was happy throughout the hospital admission process, and met a younger girl name Su-Ji, who was going to have the same surgery the day after hers. I think it was a good thing that those two could depend on each other while waiting for the surgery. They definitely had the same mind and hope.
I thought the earth is crumbling down when I saw my child coming out of the surgery. But I was thankful and happy to hear from the doctor that it had been a successful surgery. I felt proud of my daughter, whose calves were wrapped with bandages all around.
After the surgery, they told her to blow balloons even if she got sleepy. They said it has to be done to exhale out all the toxic materials left from the gas anesthesia, and it would prevent her from having fever. She was all at it after she heard this. And she comforted the girl on the next bed, who was going into the surgery the next day, and told her that it was not that painful. But she still told her it would hurt a little.
The girl on the next bed also finished the surgery safely, and the doctors came to disinfect their wounds. The moment they removed the bandage for disinfection, I was shocked thinking “oh my world!” I had never seen anyone who had the surgery up close, and looking at the pins inserted into my child’s legs made my heart sink.
During hospitalization, I had a chance to get lots of information and questions answered by other patients who had the same surgery. We had one thing in common.
I didn’t have enough knowledge about the surgery so I had to ask the doctors a lot of questions. But I wish the doctors would have given us instructions prior to the surgery about the life during hospitalization and how to manage after the surgery. If that is not possible, I think they could make a little booklet where patients can look up and refer to. Ilizarov surgery is important, but I think the things the patient has to go through after the surgery are just as important.
She was discharged after 2 weeks of hospitalization. We were at home turning the screw little by little each day. But I must have turned it incorrectly that day, she started screaming and going crazy from too much pain. So we had to call the ambulance and take her to the emergency room at KUMC. The prescription painkillers we had at home didn’t help at all, but she was able to calm down after she got injections at the hospital. So we had regular outpatient visits, and became happy as we saw her bowed legs getting longer and straighter.
During the treatment process, the areas around the pins that were stabilizing the bone started getting inflamed. She had to take inflammation and fever medicines every time she had fever and high inflammation values. The condition of the skin kept repeating being good and bad, but we still pressed on lengthening.
There is one thing I noticed during this process. To make the inflamed area get better as soon as possible, I dabbed a piece of cotton in alcohol, and wrapped it around the operated area and put gauze on it. I realized that the inflamed area healed faster when I repeated this method. Because it was heartbreaking to see my child suffer in pain, and I found out this method when I was trying out various things to make things better.
After discharge, I tried to feed her food with lots of collagen, such as pork feet or anago, for better bone healing. Even though eating well was important, the most important thing was to exercise a lot. The more you exercise, the faster the bone will heal and tendon, cartilage, and muscle will get stronger. Our flat was on the 4th floor and very small, so it was difficult to move around with crutches at home. Looking back, I regret for not making her exercise harder.
Throughout the treatment after the surgery, Yu-Na had high hopes and happiness, but she also had several months of pain as well. She had bouts of inflammation and fever, and couldn’t fall asleep from too much pain during lengthening from time to time. Also she screamed and cried from pain while the inflammation around the pins was disinfected. She was sometimes disappointed to see the scar from the surgery, but she endured it well by looking at her growing leg.
Because we lived on the 4th floor, she couldn’t go outside too often. I was living with Yu-Na and my mother, so there was no one who could support her legs and help her with going up and down the stairs. Before the surgery, I didn’t know her condition was going to be this bad, so I thought that I could help her with going to school. But when we returned home, I realized that going to school was going to be a big problem.
“Are you here to buy shoes for your daughter?”
After discharge, I looked for a caregiver and asked around many places, but that wasn’t easy either. Luckily with the help of a school teacher, we were able to find an accredited schooling website which she can take lessons and study. Schooling problem was solved this way. But every time we had an outpatient visit, we had to go up and down 4 stairs and also take the taxi since public transportation was too difficult for her.
She didn’t like being stuck at home every single day and wanted to go out. But because I also have hypochondroplasia, I couldn’t always help her whenever she wanted to go out, and I still feel sorry about that.
One thing I regretted the most after the surgery was not doing the surgery at any earlier time. I thought that could have helped with faster bone healing and shorter treatment duration. I also regret for passing down such genetic disease to my child and making her go through so much pain. I also should have done a better job with her rehabilitation treatments and made it easier for her.
One thing that I am satisfied the most is that her confidence grew as much as her height. After the surgery, she wore short skirts and skinny jeans, the clothes that she really wanted to wear. She used to think that those clothes didn’t look good on her and be jealous when girls around her wore them. She said that was what she wanted to do the most after the surgery and the treatments, so she took it as motivation to go through all the procedures. After everything was completed, she was very happy with her straightened and lengthened legs.
Now she says that she is going back to school excited about getting closer with her friends without any teasing. I think her expectations are making her happier. Before the surgery, she used to cry a lot because her height, but now she seems to be more confident.
Her face expression changed, and so did her dream. After meeting so many great doctors and nurses at the hospital, she now says that she also wants to return the love received from them by becoming a physician. She has even already chosen the department she wants. She said orthopedics would be too hard for her, so she wants to be a pediatrician.
Yu-Na, who has gone through the surgery, wants me to deliver this message to those who will have the surgery. Surgery is actually nothing compared to the actual pain that starts after the surgery. You have to be optimistic so that you can endure all the conditions such as inflammation and disinfection. You should also exercise hard to avoid any secondary surgeries later, even if you have inflammation or pain. Additionally there is a limit to how much your family members can help you and share your pain with. So is important to have strong will before anything.
There is also another thing that I want to tell to the family members of the patient. Because there is a limit to how much you can help the patient, so have a positive mind when you talk to the patient. It is important to have a positive mind that everything will be better after all the treatments are done. It takes a long time in Ilizarov surgery until the whole procedure is done. So the family members also need to take care of their health too so that they don’t get burnt out in the beginning.
Because of hypochondroplasia, I have small body structure and short height. Most people thought I was younger than my age even after I passed 20, or 30. So sometimes when people saw us from behind when my daughter and I were walking down street, they often mistook us for sisters. One time, when we entered a market, the owner asked us, “Hey kids, what are you looking for?” Then when he saw our face, he said, “Oh, you must be the mother, I am sorry.”
One day when I was pregnant with Yu-Na, my husband and I went to a shoe store. The employee at the store told my husband, “Are you here to buy shoes for your daughter?” But after he saw my pregnant belly, he felt very sorry and apologized.
There was nothing much I could do but be worried as I was living with my mother and my daughter. But I was able to find Yu-Na a big amount of happiness and smile through the broadcasting station, where they helped us with the total cost of the surgery and treatments. I am very thankful to everyone who works for The most beautiful travel in the world at SBS. We, hypochondroplasia and achondroplasia patients, are noticed everywhere outside, so I try not to be enemies with my neighbors and live with good deeds. After all the help I got from others, I realized that I should also live my life helping out people.
I could feel the warmth through everyone who helped us with Yu-Na’s situation. The church also helped us out in various ways, and I had to ask for help from the police and people passing by to help me carry Yu-Na up to the 4th floor. I am thankful to them for happily accepting my request.
There is one thing I want from the society.
First of all, I wonder if the number of patients wanting this surgery would decrease if there was no prejudice against disabled persons. The looks people give with prejudice become scars and pain in our heart and in our children’s heart who have to live with a rare disease called hypochondroplasia. My heart breaks when I see people giving penetrating stares at my child. If you can understand mother’s heart, I hope you don’t do it.
Secondly, I am hoping that many policies regarding disabled people and disability would change for us and our children. My little wish is that more job positions would be provided in workplaces where disabled people can be hired as well. I hope many changes would come forth to provide various job positions and change the prejudice against disabled people.
Thirdly, I hope the government can financially support disabled people who are to have the Ilizarov surgery, so that the family environment wouldn’t be too much affected by all the medical expenses.
Lastly, I hope people do a lot of research toward the direction of lessening the incidence of genetic diseases.
These are our children’s hopes as well.
[Congenital diseases] It heartbreaking to see my young self in her
My daughter Yu-Na and I are born with a rare disease called hypochondroplasia. But luckily with the help of the SBS TV program “The most beautiful journey in the world”, Yu-Na was able to have the surgery. So she was able to meet Professor Song and be operated right away. The operated area was the calf below the knee. Right now, we have already lengthened about 10 cm after the surgery.
She received the surgery in April 19, 2010. She was 12 years old and was in 5th grade. She was a rather timid girl but was interested in physical appearance.
Because I already had hypochondroplasia, I was worried when I first had her. This is a disease that has a 50% chance of being inherited to the next generation. I was hoping that she wouldn’t get those genes, so I had her. I couldn’t feel that she was hypochonroplasiac at first, but as she became 2, 3 years old, she started showing the typical features of hypochondroplasia. Her mental or cognitive development was quite faster than other kids, but I noticed that her bone development was slower than others. “Oh, she inherited the disease” I noticed, and I felt guilty.
It was heartbreaking to see her go through the same thing that I had to go through when I was little. It was unbearable to see her get stared at by people around her. Other kids didn’t play with her just because of the fact that she was short, and teased her, calling her names like dwarf, peanut, and shorty. Especially the boy would just hit her and run away.
Yu-Na would come home and burst into tears, telling me about all the things other kids did to her. She always told me that she didn’t want to go to school and didn’t want to see any of her classmates. Because of that stress, she even started showing other odd habits. Yu-Na, who had no problem with bedwetting since 1 year old, started wetting her bed again frequently. To correct this, I even made her wake up several times in the middle of the night to make her go to the bathroom. She was able to recover from bedwetting after a few years.
My mother, after seeing both me and my daughter with such condition, suggested that Yu-Na gets a surgery. One day she went to a rehabilitation clinic and bought leg braces for her. The frame did somewhat correct the bowing, but it was too uncomfortable for a little child. She had it on for about a year which helped with correction in some extent, but it had nothing to do with leg lengthening.
Yu-Na was stressed because of her height every single day. Everyone in the family was concerned about how to help Yu-Na grow taller. When she was in 3rd grade in elementary school, the medical head of the rehabilitation center we had been going to knew Yu-Na’s situation and gave our contact information to the broadcasting company. We got a chance to appear on a special winter show that was made to financially help out people in hard situations. Thankfully, we got help of about 5,000,000 won.
At that time we knew nothing about the Ilizarov surgery. We had our hopes on hormone therapy and so she got injections for 1 year. But actually growth hormone therapies don’t show that much effect to hypochondria patients. But I think her physical growth sped up rather than growing taller because of growth hormone. Her breast development started when she was in 4th grade and her first menstruation started at the age of 11.
The first time I found out about my and Yu-Na’s exact diagnosis was when I met Professor Song at KUMC. I knew about the name of the disease but this time I learned the exact diagnosis after various genetic tests. When we were going through the tests, I was desperately hoping that Yu-Na wouldn’t have the same diagnosis as mine. But my father, my daughter, and I were all given the definite diagnosis of hypochondroplasia.
I was not sure whether it was because she was still young, or because she was used to living with short height, but Yu-Na seemed to be indifferent about the diagnosis. But other family members were depressed, feeling hurt once again.
We heard the result after the first encounter with Professor Song. He told us that with the Ilizarov surgery, we could grow 10cm taller and our bowed legs could be corrected. Yu-Na was very enlightened by this news and said that she absolutely wanted the surgery. He showed the x-rays of the patients he had operated so far, and told us that calves, thighs, and even arms could be lengthened. My eyes got teary after the thought of Yu-Na getting taller.
But I also told Yu-Na about the complications and the dangers that come with the surgery. I didn’t want her to regret when she got older.
With no hesitation, Yu-Na said she wanted to have the surgery as quick as possible, despite me telling her about all the possible side effects. Because she was so firm on her decision we got a surgery date on the first day we went to the hospital. She was looking forward to the surgery day by day and told all her friends about it.
Her surgery was on April 19th. 3 days prior to the surgery, she was happy throughout the hospital admission process, and met a younger girl name Su-Ji, who was going to have the same surgery the day after hers. I think it was a good thing that those two could depend on each other while waiting for the surgery. They definitely had the same mind and hope.
I thought the earth is crumbling down when I saw my child coming out of the surgery. But I was thankful and happy to hear from the doctor that it had been a successful surgery. I felt proud of my daughter, whose calves were wrapped with bandages all around.
After the surgery, they told her to blow balloons even if she got sleepy. They said it has to be done to exhale out all the toxic materials left from the gas anesthesia, and it would prevent her from having fever. She was all at it after she heard this. And she comforted the girl on the next bed, who was going into the surgery the next day, and told her that it was not that painful. But she still told her it would hurt a little.
The girl on the next bed also finished the surgery safely, and the doctors came to disinfect their wounds. The moment they removed the bandage for disinfection, I was shocked thinking “oh my world!” I had never seen anyone who had the surgery up close, and looking at the pins inserted into my child’s legs made my heart sink.
During hospitalization, I had a chance to get lots of information and questions answered by other patients who had the same surgery. We had one thing in common.
I didn’t have enough knowledge about the surgery so I had to ask the doctors a lot of questions. But I wish the doctors would have given us instructions prior to the surgery about the life during hospitalization and how to manage after the surgery. If that is not possible, I think they could make a little booklet where patients can look up and refer to. Ilizarov surgery is important, but I think the things the patient has to go through after the surgery are just as important.
She was discharged after 2 weeks of hospitalization. We were at home turning the screw little by little each day. But I must have turned it incorrectly that day, she started screaming and going crazy from too much pain. So we had to call the ambulance and take her to the emergency room at KUMC. The prescription painkillers we had at home didn’t help at all, but she was able to calm down after she got injections at the hospital. So we had regular outpatient visits, and became happy as we saw her bowed legs getting longer and straighter.
During the treatment process, the areas around the pins that were stabilizing the bone started getting inflamed. She had to take inflammation and fever medicines every time she had fever and high inflammation values. The condition of the skin kept repeating being good and bad, but we still pressed on lengthening.
There is one thing I noticed during this process. To make the inflamed area get better as soon as possible, I dabbed a piece of cotton in alcohol, and wrapped it around the operated area and put gauze on it. I realized that the inflamed area healed faster when I repeated this method. Because it was heartbreaking to see my child suffer in pain, and I found out this method when I was trying out various things to make things better.
After discharge, I tried to feed her food with lots of collagen, such as pork feet or anago, for better bone healing. Even though eating well was important, the most important thing was to exercise a lot. The more you exercise, the faster the bone will heal and tendon, cartilage, and muscle will get stronger. Our flat was on the 4th floor and very small, so it was difficult to move around with crutches at home. Looking back, I regret for not making her exercise harder.
Throughout the treatment after the surgery, Yu-Na had high hopes and happiness, but she also had several months of pain as well. She had bouts of inflammation and fever, and couldn’t fall asleep from too much pain during lengthening from time to time. Also she screamed and cried from pain while the inflammation around the pins was disinfected. She was sometimes disappointed to see the scar from the surgery, but she endured it well by looking at her growing leg.
Because we lived on the 4th floor, she couldn’t go outside too often. I was living with Yu-Na and my mother, so there was no one who could support her legs and help her with going up and down the stairs. Before the surgery, I didn’t know her condition was going to be this bad, so I thought that I could help her with going to school. But when we returned home, I realized that going to school was going to be a big problem.
“Are you here to buy shoes for your daughter?”
After discharge, I looked for a caregiver and asked around many places, but that wasn’t easy either. Luckily with the help of a school teacher, we were able to find an accredited schooling website which she can take lessons and study. Schooling problem was solved this way. But every time we had an outpatient visit, we had to go up and down 4 stairs and also take the taxi since public transportation was too difficult for her.
She didn’t like being stuck at home every single day and wanted to go out. But because I also have hypochondroplasia, I couldn’t always help her whenever she wanted to go out, and I still feel sorry about that.
One thing I regretted the most after the surgery was not doing the surgery at any earlier time. I thought that could have helped with faster bone healing and shorter treatment duration. I also regret for passing down such genetic disease to my child and making her go through so much pain. I also should have done a better job with her rehabilitation treatments and made it easier for her.
One thing that I am satisfied the most is that her confidence grew as much as her height. After the surgery, she wore short skirts and skinny jeans, the clothes that she really wanted to wear. She used to think that those clothes didn’t look good on her and be jealous when girls around her wore them. She said that was what she wanted to do the most after the surgery and the treatments, so she took it as motivation to go through all the procedures. After everything was completed, she was very happy with her straightened and lengthened legs.
Now she says that she is going back to school excited about getting closer with her friends without any teasing. I think her expectations are making her happier. Before the surgery, she used to cry a lot because her height, but now she seems to be more confident.
Her face expression changed, and so did her dream. After meeting so many great doctors and nurses at the hospital, she now says that she also wants to return the love received from them by becoming a physician. She has even already chosen the department she wants. She said orthopedics would be too hard for her, so she wants to be a pediatrician.
Yu-Na, who has gone through the surgery, wants me to deliver this message to those who will have the surgery. Surgery is actually nothing compared to the actual pain that starts after the surgery. You have to be optimistic so that you can endure all the conditions such as inflammation and disinfection. You should also exercise hard to avoid any secondary surgeries later, even if you have inflammation or pain. Additionally there is a limit to how much your family members can help you and share your pain with. So is important to have strong will before anything.
There is also another thing that I want to tell to the family members of the patient. Because there is a limit to how much you can help the patient, so have a positive mind when you talk to the patient. It is important to have a positive mind that everything will be better after all the treatments are done. It takes a long time in Ilizarov surgery until the whole procedure is done. So the family members also need to take care of their health too so that they don’t get burnt out in the beginning.
Because of hypochondroplasia, I have small body structure and short height. Most people thought I was younger than my age even after I passed 20, or 30. So sometimes when people saw us from behind when my daughter and I were walking down street, they often mistook us for sisters. One time, when we entered a market, the owner asked us, “Hey kids, what are you looking for?” Then when he saw our face, he said, “Oh, you must be the mother, I am sorry.”
One day when I was pregnant with Yu-Na, my husband and I went to a shoe store. The employee at the store told my husband, “Are you here to buy shoes for your daughter?” But after he saw my pregnant belly, he felt very sorry and apologized.
There was nothing much I could do but be worried as I was living with my mother and my daughter. But I was able to find Yu-Na a big amount of happiness and smile through the broadcasting station, where they helped us with the total cost of the surgery and treatments. I am very thankful to everyone who works for The most beautiful travel in the world at SBS. We, hypochondroplasia and achondroplasia patients, are noticed everywhere outside, so I try not to be enemies with my neighbors and live with good deeds. After all the help I got from others, I realized that I should also live my life helping out people.
I could feel the warmth through everyone who helped us with Yu-Na’s situation. The church also helped us out in various ways, and I had to ask for help from the police and people passing by to help me carry Yu-Na up to the 4th floor. I am thankful to them for happily accepting my request.
There is one thing I want from the society.
First of all, I wonder if the number of patients wanting this surgery would decrease if there was no prejudice against disabled persons. The looks people give with prejudice become scars and pain in our heart and in our children’s heart who have to live with a rare disease called hypochondroplasia. My heart breaks when I see people giving penetrating stares at my child. If you can understand mother’s heart, I hope you don’t do it.
Secondly, I am hoping that many policies regarding disabled people and disability would change for us and our children. My little wish is that more job positions would be provided in workplaces where disabled people can be hired as well. I hope many changes would come forth to provide various job positions and change the prejudice against disabled people.
Thirdly, I hope the government can financially support disabled people who are to have the Ilizarov surgery, so that the family environment wouldn’t be too much affected by all the medical expenses.
Lastly, I hope people do a lot of research toward the direction of lessening the incidence of genetic diseases.
These are our children’s hopes as well.