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Krista was born July 21, 1987. We had no idea that there was any kind of
problem until she was born and, of course, had never heard of Aperts Syndrome.
In addition to the usual problems with the head, fingers and toes Krista
had choanal atresia (bone completely blocking the inside of her nose) and
fused elbows and shoulders. She has had over 30 operations; more than half
were in her first couple years on her nose to get it open and keep it that
way. Just last summer (1996) she had some rebuilding done inside her nose
and was finally able to breath through it!
 Krista is in
third grade. She went to a small private school for the first years. It
helped her a lot to have the smaller class size. This year we are home
schooling Krista to give her a more one-on-one setting, less distraction,
and more flexibility in working on some areas. Her favorite subjects are
spelling and English. She likes to read. Her favorite books are the Bible
and "Charlotte's Web." Last year she did a display on surgery for her science
fair and did a great job. She got first place in her class and 49 out of
50 at the regional/state contest. She obviously knew her subject. I think
it was the most that some people had ever seen her talk (she's a little
shy). She also likes drawing and coloring - she wants to be an artist when
she grows up.
Krista's fused elbows and shoulders, and stiffness in her hips and ankles
make it hard to do a lot of activities. One sport she has been able to
do is downhill skiing. A local organization teaches skiing to disabled
people using adaptive equipment and volunteer helpers. Krista started when
she was 5 and has used less extra equipment each year. Just this year she
made it down the "big hill" (at least it's big for Minnesota) all on her
own! An extra treat is that Bob (dad) is her helper.
We keep in touch with 6-7 other Apert's families in and around the Minneapolis/St.
Paul area. All but one are younger than Krista. We don't hear much from
older people with Aperts so Teeter's Page and the Aperts listserver have
been really informative.
We have two other children - Elisa, age 5, and Andrew, age 3. Over time,
having Aperts Syndrome in the family has drawn us closer together. We each
deal with it in different ways and at different speeds. One thing that
has been meaningful to us is several Bible verses. Krista's favorite verses
are 1 Samuel 16:7 says "God does not see the same way people see. People
look at the outside of a person, but the Lord looks at the heart." And
Jeremiah 29:11, "'For I know the plans I have for you.' declares the Lord.
'Plans to prosper you and not to harm you, to give you hope and a future.'"
That helps put everything into perspective.
Mary and Bob Horning
14411 Alabama Ave. S.
Savage, MN 55378
(612) 440-5138
[email protected] |
