Paige
Microdeletion on 16p
Since birth we always knew our daughter, Paige, was special, as most parents experience. I even remember secretly telling my husband how lucky we were to have such a good and beautiful baby. We soon started to notice that she was not like the other infants her age. While they were all progressing and rolling and sitting and so on Paige was not meeting any of our milestones. I was a stay at home mom and gave my undivided attention to my new daughter, so it was confusing that she was not only missing her milestones but falling behind when I fully expected her to be advanced with all of the "working out" we were doing. I was doing everything right and still no or little results. So, the testing started and at every turn we were disappointed with no answers and then delighted when MRI's etc were all coming back and the results were that she was "fine". It's been a real roller coaster of emotions and now we know the ride is slowing to a stop. We have our answer, and yet NO ANSWERS. Paige has a VERY rare Chromosome condition.
She has a microdeletion on
chromosome 16p. There is
not another reported case as of now, there is no
syndrome, no name, no indication of what the future
holds for her. I cried thinking of what she might be
missing out on later in life. Before I found out, I
had acted out in my mind how I would comfort her with
her first heartbreak, help her pick her prom dress
out, marriage, all the things a mother dreams of for
her daughter. Now I find myself having to create new
dreams for her future. I have learned alot this past
year. My research has led me to pictures and stories
of other children that are worse off, as often as I am
advised to find comfort in the fact that she is not as
effected as they are, it doesn't comfort me. I just
recently decided I have to accept that I may not be
happy with what we know she has, but instead be
delighted with what we know she does NOT have. She is
the happiest child her age that I know, she is not in
pain, there are no surgeries that she is undergoing to
survive. If I start to get down, instead of finding
others who are worse off, I just go to her and her big
"Spongebob" smile heals me. Everyone that sees her, is
drawn to her and her great personality and sweet
disposition. I would not change her for anything! I
would love to share photos of her if you want to print
this story. They will surely give hope and healing to
other new families who are part of this condition or
other chromosome conditions. Because it's not ALL bad!
:)