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I Am A Sibling Of A 4p- Special Needs Child. Ask Me Anything.

I have a brother with a disorder known as "Four P Minus" or Wolf-Hirschhorn syndrome.



I have a lot of experience (over 20 years) in caring for and living with special needs children, and the experiences that go with them.

Trachs (surgical procedure to put breathing aparatus into the Trachea)

Seizures -- Grand Mal and Petit Mal

Physical and mental limitations

Developmental delay

Being "that retarded kid's sister"

frequent hospital visits

wheelchair and walker issues

problems getting disability benefits

giving up your life to take care of someone else

the "small" accomplishments that mean so much

 

Seriously, there is so much about this. If you want to know anything, just ask.

darkchild23 darkchild23 22-25, F 7 Responses Feb 23, 2010

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i really admire u... u have broken all odd's as a sister... it's so funny how some of us are blessed i abundance and still are never satisfied with what v have... i know how hard it must be to be there for him all the time and u have proven to me a lil mom to him... i wish i was as luck as u to stay close to my brother... i have a brother of 14 who lives in a boarding school after my parents split that's 500 miles from where i live and work. v meet once in a year so so... miss him a lot... i wish for once i could be u....

From 1st through second grade, my brother and I went to the same school. The other kids and yes, sometimes even the other parent -- and twice a teacher -- asked me what was "wrong" with my brother. So by second grade I learned what chromosomes were and how they changed who he was, and I was able to tell people why he was so different. I've had a long time to understand and practice my explanation, and though now the words are bigger, the explanation hasn't changed that much. He's different, and he's special, but he is who he is through an accident of genetics. There are days when I wish I didn't have to deal with those differences, and days when I couldn't imagine living any other life. Through him and my life with him I have learned patience, tolerance, acceptance and to cherish every single moment of life that you are allowed to live. I've learned what it really means to be a human being. It is something I really wish I could share with all the world, and being allowed to tell someone else about it makes me feel like I'm bringing a little bit more tolerance, understanding and acceptance. I'm glad to be able to share my story, and even more glad to everyone who takes the time to read it.

I just wanted to Thank You for educating me on the disorder. I hadn't heard of it before, and your explanation was quite good.

No, you answered better than I expected. That's some disorder, but he is strong and so are you. Both of you are remarkable to live with that.

All I can say is, I admire you. I don't know you, but I do admire you, and those like you who choose a life of service to your siblings and family, rather than a life of your own. I've never had to make the sacrifices you have, and I don't honestly know that I could have. Thanks for being you.

It is a genetic disorder that results from the deletion of chromosomal information on the Fourth Pair of chromosomes. (the 4th pair is missing information, thus 4p-) The severity of the disorder depends on how much information was deleted. Very mild deletions lead to nearly-normal children in size with only moderate mental impairment. In the case of my brother, it is a severe deletion, nearly the largest non-fatal deletion possible. The deletion is apparently random, no connection ever made between drug or alcohol abuse, or other environmental factors. No genetic group is more at risk than any other. More girls are affected by this disorder than boys, but most deletions seem to originate from the father, being a defect in the ***** rather than the egg. <br />
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My brother is 25, but he only weighs around 70 lbs and is only around 4 feet tall. He shows most of the physical traits -- a "greek helmet" appearance to his face, low lying ears, wide spaced eyes. He has a curved spine, cannot form words, even though he communicates by pointing, and non-verbal noises, like grunts. He has severe developmental delay. It took him almost 2 years to be able to sit up on his own, he never crawled, and he is only now getting to where he will stand up on his own. <br />
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It is a difficult diagnosis to explain. It is a disorder that must be experienced to be understood. <br />
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He has had many medical issues, but despite it all, he is a very happy and loving child. His three favorite things are his stuffed doll, food, and being cuddled. He truly is a remarkable person. For more technical description, read my story "the little miracle". <br />
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Did I answer your question or is there anything else you'd like to know specifically?

What is Four P Minus?