Name Kaelia Sweeney
Gender Female
Diagnosis Distal 10q
Parents Jawnna Bennett and Michael Sweeney
City Orient, OH, USA
Email Jawkoo [at] hotmail [dot] com
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February 9, 2015
I was only 16 when Kaelia was born. she was born 10 days past her due date. she was a small 6 lb 1 oz. the only thing at birth that i was told that was wrong is that they could dislocate her hip. She always measured small but at her one year check up she only weigh 15 pounds and she started to loose weight. I was still breastfeeding at the time and she was eating some solids. they also diagnosed her with small eye lids. At this time they thought her delay in gross moter stills was due to the brace she wore for her hip. she was able to roll over and craw. Kaelia was placed on a NG- Tube and blood work was taken from her to see if any other things would show up. we were keep much in the dark about what they may have been looking for.

At 15 months Kaelia she had a few seizures. A few scary emergency room visits later were able to get into see a nurogoest. By this time we got the diagnosis of Partial Trisomy 10Q. We went through lots of testing EKGs, MRIs, cat scans more blood test. We were told that she had Agenesis of the corpus callosum( the structure that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent). At 16 months she was admitted to the hospital with seizures she was having 30-40 a day. At 18 months she as back in the hospital with more seizures and to have a G- tube put in. During this time Kaelia forgot how to swallow liquids. The doctors found a combination of two medication that worked for her seizers and she was seizure free.

Kaelia was enrolled in a early intervention program for special needs children. At 5 years old she was taken off seizure medication and remains seizure free. When Kaelia has very flexible joints. she was able to turn her feet inward and touch her nose. she could bend her thumb back and touch her wrist. At 5 Kaelia dislocated her hip and was put in a cast for 8 weeks. At 7 years Kaelia learned to walk. Kaelia walks very stiff legged and is unable to run. Kaelia has done very well with her heath. she has only been in the hospital only once after the age of 2. In 2004 at of age of 13 she had surgery on her back for severe scoliosis.

At 5 Kealia transferred to school aged special needs program. Kaelia aged out of the special needs school at 22 and is in a day program. Kaelia also has an aid that helps with her care. Kaelia loves taking walks, going to dance class and watching horses. Kaelia is 23 years old now and is small for her age. she is about 4'7" and weighs about 90 pounds. she will eat some by mouth but uses a G-tube for most of her nutritional needs.

Kaelia has 3 Sister that are carriers ( equal translocation with chromosome 10 and 4) like her father. and one brother with out any chromosome issues.

Jawnna Bennett