Hi everyone 
So I was just lurking around (as you do
) and thought I would introduce myself. Im thinking I may be able to help some of you 
So my little brother (who is not so little anymore, he is 21 in August) was born with an extreamely rare chromosome abnormality. We only know of 1 other person in the world to have it and it doesnt actually have a name its that rare. Basically there is a problem with his no. 17 chromosone (however not too much is known about it).
A bit about him. Well when he was born he was like any other baby. However, his development was quite delayed and he didnt start to walk until about 18 month (dont quote me on that). It wasnt until he was about 2 when doctors did some investigations due to servere constipation that he was diognosed. Of course though, because it is so uncommon they couldnt really tell us what to expect.
To cut a long story short he is mentally developmentally delayed (about age 5 years) he cant read or write but you can hold a decent convo with him. He attended SEN schools since he was 5 (he was kept back a year as he was born in august and it seemed the best thing for him).
Medically he has a few issues, he developed epilepsie when he was young which he still suffers from now (bless him) he can go some days with no seizures, other days he can have 6-7. They result in him falling and he has had a few scary falls resulting in broken bones and stitches being needed in his head!!! but he is a very tough cookie! (he doesnt seem to feel pain, i have never seen him cry since he was a baby) He has a device fitted in his collar bone area which sends electrical signals to his brain to try and prevent them. Sorry i cant for the life of me remember the name of it but if anyones interested i will ask my mam tomorrow for you We think it has worked for him a bit. He is also on a lot of meds for them. Poor thing 
He also has low muscle tone (hence the constipation...thats fine now tho). He dribbled quite a bit and a few years back he had 2 op's to tie his saliva glands. Out of the 4 he has had 3 tied and he still dribbles now...although there is a marked improvement. Thats about it medically. I know it may sound a lot to some people but personally i think he has done really well.
When he finished school (at 18) he went on to residential college, which he LOVES. He has really came on with his development since he has been there (because my mam isnt there to do everything for him, bless her). He is due to leave there this summer and at the moment were busy working with his social worker etc to find him a shared house and to arrange what he will spend his days doing.
He is the most precious thing in my life and i love him to bits. He is so loving and if someone said to me they could make him "normal" tomorrow i really dont think i would want them to!!!
Sorry its turned out long but i just thought that with me being a sibling of a SEN child/person, him being such a rare case and also him being older that I may be able to offer you guys some insight into things that may be worrying you
So I was just lurking around (as you do
) and thought I would introduce myself. Im thinking I may be able to help some of you So my little brother (who is not so little anymore, he is 21 in August) was born with an extreamely rare chromosome abnormality. We only know of 1 other person in the world to have it and it doesnt actually have a name its that rare. Basically there is a problem with his no. 17 chromosone (however not too much is known about it).
A bit about him. Well when he was born he was like any other baby. However, his development was quite delayed and he didnt start to walk until about 18 month (dont quote me on that). It wasnt until he was about 2 when doctors did some investigations due to servere constipation that he was diognosed. Of course though, because it is so uncommon they couldnt really tell us what to expect.
To cut a long story short he is mentally developmentally delayed (about age 5 years) he cant read or write but you can hold a decent convo with him. He attended SEN schools since he was 5 (he was kept back a year as he was born in august and it seemed the best thing for him).
Medically he has a few issues, he developed epilepsie when he was young which he still suffers from now (bless him) he can go some days with no seizures, other days he can have 6-7. They result in him falling and he has had a few scary falls resulting in broken bones and stitches being needed in his head!!! but he is a very tough cookie! (he doesnt seem to feel pain, i have never seen him cry since he was a baby) He has a device fitted in his collar bone area which sends electrical signals to his brain to try and prevent them. Sorry i cant for the life of me remember the name of it but if anyones interested i will ask my mam tomorrow for you
We think it has worked for him a bit. He is also on a lot of meds for them. Poor thing He also has low muscle tone (hence the constipation...thats fine now tho). He dribbled quite a bit and a few years back he had 2 op's to tie his saliva glands. Out of the 4 he has had 3 tied and he still dribbles now...although there is a marked improvement. Thats about it medically. I know it may sound a lot to some people but personally i think he has done really well.When he finished school (at 18) he went on to residential college, which he LOVES. He has really came on with his development since he has been there (because my mam isnt there to do everything for him, bless her). He is due to leave there this summer and at the moment were busy working with his social worker etc to find him a shared house and to arrange what he will spend his days doing.
He is the most precious thing in my life and i love him to bits. He is so loving and if someone said to me they could make him "normal" tomorrow i really dont think i would want them to!!!
Sorry its turned out long but i just thought that with me being a sibling of a SEN child/person, him being such a rare case and also him being older that I may be able to offer you guys some insight into things that may be worrying you
