He may not be able to talk, play or understand like you and I, but he can LOVE and he can love A LOT! This person I'm speaking of is my big brother Johnny, my family's blessing from above.
They always say "a parent knows" when something is wrong with their child, and believe me when I tell you, my parents knew. After taking Johnny to dozens of specialists who said 'nothing was wrong', my mom finally found a doctor (when Johnny was three) who gave my parents the most shocking news of their lives...YOUR SON HAS A RARE DISABILITY CALLED-CHROMOSOME RING 20 SYNDROME.
Never heard of it? Don't worry! Most doctors, surgeons and specialists still have no clue what it is or even what to do when we rush Johnny to the hospital after a bad seizure or attack. Since there is very little they know, there is very little they can do.
At the time he was diagnosed he was only the 7th Person IN THE WORLD to have this disorder, and now 28 years later, they say there are still only 75 people on record. When you first look at him you might not be able to tell he has a disability or that he is as old as he really is, but Johnny will be turning 29 this month, looks about 15 and has the mental/physical capability of a two year old.
While he can still walk (thank goodness), brokenly sing 'Happy Birthday To You' and say a few words like-"eat", "crackers", "pop" and his FAVORITE thing in the world that I have to sneak to him, "Coffee", we can tell his body is slowing down and his seizures are getting worse.
So why tell his story now? And Why Me?
Johnny, Anthony (my oldest brother) and I have an unspoken bond...a brother/sister bond you could call it. And while the doctors say Johnny doesn't understand much, we know that's false. Yeah, okay, he may not be able to talk to us and tell us what or how he is feeling, but he can express himself with a smile, a hug, tears, or a look of pain.
Johnny has been my motivation when I've wanted to give up, my road when I've felt lost, and my go-to-guy when I just wanted a hug. He has taught me, without words, how to live life each day and how do it with a BIG SMILE even when times get tough. Johnny is my light, my brother...my everything!
Teresa, the love & bond that you have for your brother Johnny is so amazing & beautiful! While I have only seen him a couple of times with you, it is so obvious that he adores you too. It is truly the most beautiful thing to watch the outpouring of love & how people are just so drawn to Johnny. God bless him always & you & your whole family.
ReplyDeleteJohnny is always in my prayers<3
Teresa,
ReplyDeleteI found this blog whilst looking for some other R20 information. As a parent of a R20 child, it was lovely to read Johnny's story.
I'm not sure whether you use facebook but a charity for R20 people and organisations is being set up which you may be interested in.
https://www.facebook.com/pages/Ring20-Research-Support-UK/227535607439022
There's also a closed members only group for families of R20 people.
https://www.facebook.com/groups/798475916833994
We're also plotting a map of the world's R20 cases for family interest and research purposes. The public version of the map can bee seen here.
https://mapsengine.google.com/map/embed?mid=zg_ssVj-paBI.k30dUsbfkmA4&pli=1
Again, lovely to hear your story and maybe see you and your family on facebook?!
Jon
My brother was also diagnosed with this disorder. And like you I have a very close bond with him he is one of the littles of my life he is one who keeps me going. Even though the disorder keeps him from doing many of the things that I do or any child his age but when I look at him I realize that he is doing so much more than any other child his age. He is so important to me.
ReplyDeleteMy brother was also diagnosed with this disorder. And like you I have a very close bond with him he is one of the littles of my life he is one who keeps me going. Even though the disorder keeps him from doing many of the things that I do or any child his age but when I look at him I realize that he is doing so much more than any other child his age. He is so important to me.
ReplyDelete