A Holiday Tale!

Dercum's Disease
#1

Allow me to diverge a little and brag about my great-nephew. He is a triplet now in our high school for the blind. His eyes did not develop as the boys were premature. The other triplets have strong glasses but can see. Sammy is a gifted piano player.He plays by ear for weddings and so forth. Now, on the national news last night with Katie Couric they had a story about him and his band. They have the first blind marching band in the nation! Volunteers march behind them with their hands on their shoulders and guide them as they play. They will be performing at the Rose Bowl next year…not this year!! We are so proud of him. He was the main boy interviewed on the TV segment. Our niece has done a wonderful job with her boys. She had a one year old boy when they were born…no fertility drugs…so she had four boys under one! They are all athletes and involved in the special olympics. The other boys help all the other children. This was just a holiday story to make you all happy as I am.

Hugs and Joy from Grandma Sylvia

#2

Hi Sylvia,

That is soooo cool! I can tell what a proud Auntie you are! Be sure to remind us to watch the Rose Bowl Parade when he will be performing. I want to watch! Thanks for the feel-good story!

Hugs,
Pamela

#3

HI SYLVIA
I love to hear what acheivements the young of today do as most you hear or read is negative your great nephews and neice show us and remind us that live is full of good as well as not so good well done to your lovely family it brought a smile to my face which sent some feel good endorphins through my body which again is good thankyou for sharing your proud moment its nice to no we do have happy momements not involving dd
hugs and wishes to you all from Helena

#4

Oh that is so wonderful! I wish I would have seen the story on the news with Katie Couric! When the band plays at the rose bowl I hope you will post a reminder so I won’t miss it. What a great accomplishment! Thanks for sharing it, this is my first mail of the day and it is nice to start the
day with a smile :slight_smile:

Hugs,
Suri

#5

You can search for “ohio state school for the blind” and you can hear them play! Select the second thing. Sam is on the trombone. OSU is known for doing the script Ohio…these kids do a braille script Ohio!!! They are the first marching band ever in the world! I hope that my grandson Alex will volunteer when he is not so busy in his own band, to be a helper with Sam’s band. He is a great marcher! He just got an award for being an outstanding marcher and player. We did not know if he could do it at all with his osteoporosis but he sure did! He played the last concert with a badly sprained elbow (not fractured this time). Hugs, Grandma Sylvia

#6

Grandma Sylvia,
that is wonderful, you and your family have much to be proud of. It is absolutely amazing what your child can do if you never put limits on them. Your neice is an amazing person. I understand what it is like to have multiples but I can’t imagine having that many! Wow, what a woman.
I have identical twin boys that were born 4 weeks overdue. They messed up my due date and kept stopping my labor. I have 2 boys that have been wearing glasses since they were 6 months old. They are great kids. They had their first eye operation when they were 11 months old. I patched their eyes from the time they were 6 months old until they were 11. The boys were born with severe stabismis. Their eyes crossed completely. The doc said it wasn’t likely that they even saw me until after their surgery. They now have ambliopia and I can’t think of the name of it but it’s when your eyes bounce. They are considered legally blind in one eye…and their other eye is almost as bad. They play video games like you wouldn’t believe. I especially love it when they play rock band on their xbox. My son plays the hardest one at almost perfection on the drums and guitar. I don’t know how he does it since I can barely see the dots as they wiz on by. It’s really incredible. they are supposed to be in a competition with it in the greenville area.

#8

oops,
wrong link

#9

Thanks for the link, Christine. That was really cool!

Hugs,
pamela

#10

Thanks for the link. My niece said all the boys will be helping the marchers maybe herself and her husband as well. She was a music major in college so that helps. Sam has perfect pitch and is quite a pianist. One of the other triplets lost the vision in one eye due to an accident. Would vision correction surgery help your sons? My son had amblyopia and his eyes looked out. He wore a patch on his better eye from six months to three years. I used to cover the black patches with colorful material to encourage him to wear them. I have many pictures of him with the patch pushed up on his forehead! He would not take it completely off just push it up. It is so hard to cover up the eye they can see out off…they do not understand why you are doing that at six months. It paid off as he would have been blind by kindergarten from the amplyopia. He had surgery at age three and again at age 16 but his eyes still “wander”. He wears a prism in his glasses to draw his eyes in. He has monocular vision instead of binocular so he could never see a ball coming at him. He sees well now but his eyes wander if he is tired. I had the surgery at age 16 and mine was quite successful. One of my sisters and my grandma had the muscle thing so I knew what to look for and took Chris at six months. My daughter Leah had “coke bottle” glasses from kindergarten. She had contacts by high school. She had the vision correction surgery and can see 20/20 now! My husband was also occupationally blind. He had cataract surgery and now can see well for the first time in his life. His mother and the orphanage did not provide glasses for him when he was growing up and he could not see until he finally got glasses when he was a junior in HS. He had to have them to play basketball. He went almost all the way throughschool not being able to see the blackboard or his books very well. I am sitting here typing with my left eye closed so I can focus. I will be getting cataract surgery some time on that eye and maybe then I will be able to see better. The DD gives me very dry eyes and that causes a lot of blurring along with my diabetes. I have to get up close to my laptop to see what I have written! I still read a book every two days so my eyes get quite a work out. I have another friend who had a daughter three months premature whose eyes had not fully developed but they did develop after birth! You could see the ridges in her eyes where they had not fully formed yet. She was very lucky! Sam’s eyes have “sunken” in his head so I don’t think the advances in vision care will help him. It must have been hard to patch two at a time! Chris was always running into door frames and knocking over his beverages at every meal as he could not judge distance. Eyes are precious. I hope that your boys end up with improved vision. The advances they have made in my lifetime are amazing! Hugs to you and the boys…Grandma Sylvia

#11

Grandma Sylvia,
The boys are mononuclar too. They don’t have depth perception. The doctor said that they cannot get vision correction surgery until they are 18 and they would still have to wear glasses. I am going to check into it again then. They said that they can’t do it before because the eye won’t be fully developed.

#12

Christine…just another thing we have in common to talk about! Just watch out when they start driving. I would suggest that you don’t put them on your car insurance but have them get thei own. : ) Hope you are feeling somewhat better now. This cold weather is so hard on us. I have been unable to walk or sleep much from the pain. Hugs, Grandma Sylvia

#13

While we are on the subject of vision I will tell you that the kids called me wall-eye and made fun of me. Once a boy put his elbow through my glasses and the lenses were made out of glass. The principal put a dressing on it and drove me to an eye surgeon who removed over 70 pieces of glass from my eye. When I was 15 a dear teacher offered to pay for my vision correction surgery and I was brought to Columbus and had the surgery. My mother never would have gotten the surgery for me. I was very lucky and my vision isn’t too bad and my eye is fairly straight. We moved so much I went to several schools a year but I will say that the teasing did not bother me too much. I would just tell the kids we were migrant workers (we really weren’t) and proceed to always get the best grades in the class to show them up! My teachers were always very kind to me and interested in helping me make something of myself. I like to think that I did! Hugs and encouragement to the boys, Grandma Sylvia

#14

Grandma Sylvia,
I love the fact that we can talk so freely to one another. I thank god to have friends like you. I am feeling a bit better. I am taking pain killers to help with the pain and am having better days. I don’t like taking them though. I hate taking all the pills. Oh well. Better Living through Better Chemestry! That is aweful about your eye! I understand how children can be cruel. Luckily, my children have been blessed with great sense of humors and confidence. They have always been popular. I think that is because they are good looking boys and are twins. No one has EVER made fun of their eyes. I always worried about that as they grew up. I am so proud of them and I am proud of you too. You are such a strong woman. Your strength inspires me. I am going to get back to my research soon. I am still adjusting to my med increase.

#15

WOW, thanks for the link! How wonderful! So uplifting and inspiring!!!