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Meet a Child with Achondroplasia

Lacey-Mae, Girl with a Cause

GEMSS would like to thank Lacey-Mae and her family for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

Lacey-Mae bedazzles with her chatter and charm. From her early experience in Toddler pageants, she has gained confidence in herself and in social situations. Kerry Ann, her mother says Lacey-Mae is a ‘social butterfly’ and that she is bubbly, very talkative and outgoing. At home with 2 siblings and 2 foster children, she is one of the older children.

Lacey-Mae was born with achondroplasia. She had “1/2 of her tongue” and her vocal cords were paralyzed, says Kerry Ann, which prevented sucking and she didn’t make sounds her first year, not even a cry. She was in the NICU for one month and they think that a cranio-facial nerve was paralyzed and this eventually resolved at about 1 year of age. This is not a usual finding with achondroplasia, just something that was unique with Lacey-Mae.

Lacey-Mae received Early Intervention services and attended a regular preschool in her hometown. She had a 504 plan that helped with such supports as having a water bottle with her at all times (she can overheat easily) or having some adaptive PE to prep her for regular gym classes. Although she has to be careful with her neck and jumping, Kerry Ann did not want over-precautions to limit Lacey-Mae. She has attended school with her peers all the way through!

Now 13 years old and in high school, Lacey-Mae is involved in an Anime Club and was a Girl Scout. She is no longer involved in pageantry but is finding other interests.

Lacey-Mae has not had many medical issues after her early start. She had a lumbar curve in her spine early on but that is gone. An MRI of her neck shows that it is “perfect.” Her legs have a very slight amount of bowing.

Her experiences in school have generally been very good. Some teachers have patronized her or pointed out her size in an unkind way. A terrifying incident in middle school happened when she was using the steep staircase in a “mad rush” of people and she fell and was hurt in the crowd. It was written into the IEP that she should use the elevator instead. Her teachers and classmates have been very kind and accepting for the most part.

Because Lacey-Mae can’t write as fast or run as fast and typing is hard to do quickly, problems are addressed by her team.

Lacey-Mae has been an activist in an anti-bullying campaign she created called Peace by Piece which can be found on a YouTube channel and Facebook. This started after a bullying incident that led to her needing stitches. However, she and the boy who did this to her are now friends. Lacey-Mae also likes to draw and sketch (some of her sketches are pictured) and she is teaching herself to play the piano.  She still loves to dance, and sings at church.  She will be attending her first church mission trip this summer 2017!

Lacey-Mae likes to be with people of average size, says Kerry Ann. She certainly seems to be a person who uses her voice strongly to advocate for herself and make a difference for others through her anti-bullying campaign!

Kerry Ann’s Advice to Parents:

  • Don’t worry! If you are so worried about acceptance and the “what if’s,” you will prevent your child from getting anywhere.
  • Treat your child like everybody else. Kids will be kids and are full of personality.
  • Meet with the teachers ahead of time.

Kerry Ann’s Advice to Teachers:

  • Have patience. Students may have a hard time writing and running, may even get frustrated and cry. Their hands might hurt from writing. Treat them the same but allow them extra time or supports to prevent frustration. Don’t let it get to that point.
  • Accept that their output may need to be different - shorter, for example, such as writing one paragraph instead of 4.
  • Meet with parents ahead of time. Parents may do a little explanation or presentation to explain achondroplasia to get questions out of the way. Allow questions and answers with the students, staff and parents.
  • Don’t be afraid! Sometimes fear of neck injury makes teachers overly concerned and cautious. Swings, slides and ladders were just fine for Lacey-Mae!