However
the next morning a pediatrician came in to see us and informed us that
he felt CariAnn had full DS. He was very blunt and gave us no hope what
so ever. But we were not sure about his diagnosis and kept it to ourselves
and suffered in silence and shock. In 4 weeks time the test results
came back with Mosaic DS. Well, I wasn't sure what that meant but we
saw a genetic specialist shortly after and he was better explaining
the situation. Our genetic specialist had never seen a baby with MDS
so he took special interest in CariAnn and still continues to see her
occasionally when CariAnn requests it. He insisted that we keep her
diagnosis to ourselves so that she would have a better chance in life.
He felt that labeling a child early on only hurts their self-esteem
and people expect less of them. I do feel he was correct although it
was extremely hard on our family.
CariAnn
was a happy baby and very busy toddler. She reached all her milestones
on time and surpassed many. At a health nurses advice we enrolled CariAnn
in kindergarten a year early. It was difficult for her and we stopped
sending her and waited for the proper year. The next year she was ready
to go with the children her own age. She progressed very well. Her speech
needed a little help but no more so than many of the children. Other
than the occasional speech therapy in the early grades, CariAnn received
no extra help at school.
CariAnn
finished high school with a diploma. She was beautiful at the night
of her graduation. We were very proud of her accomplishments. After
high school CariAnn worked at a few fast food outlets. She soon tired
of the restaurant business and decided to go back to school. She attended
a business college graduating last year in business computerized accounting.
She did very well with a GPA of 3.42 (86% average.) It did take her
longer to finish than average but she did it and we are so proud of
her.
Last
year CariAnn was diagnosed with a thyroid disorder. This is very common
in individuals with MDS. We feel that she had been battling this problem
for some time. Thyroid disorders can cause weight gain and disrupts
emotional well-being. Since CariAnn is short 4 feet 10 ½ inches
it is harder to stay slim. She tries very hard to keep active. She loves
to ride her bike, swim and ski. She also has her driver's license. She
passed her license on the first try!
CariAnn
lives on her own in a basement suite. She has a wonderful landlady who
looks out for her. She has some good friends and is the happiest we
have ever seen her. We have every expectation that she will continue
to live a happy, productive life.
CariAnn
has taken the task of promoting the egroup and chats for kids and adults
with MDS. She looks forward to corresponding with all the kids and the
MDS adults. We hope that your child will join in on the fun also!
Feel
free to email me. I love to hear from other parents!
