Common questions we get about about Violets condition.

Q. Does Violet have cerebral palsy?
A. No. She has a rare disease called ADCY5.

Q. I see she uses a walker and wheel chair, is she able to walk?
A. Yes, with some support. When it comes to walking she does best in very short distances and small areas where she has something to help her keep balance on/rest on. On a very short trip to the store, a short out door activity she uses her walker. She uses her walker everyday for school, she loves the extra independence that her walker gives her. For long outings such as doctor appointments, shopping, long walks, curtain events that's when her wheelchair comes in. With her chair she can feel comfortable and safe when she gets tired and needs to rest. She hoops in when she needs to and she lets us know when she's wants to get our and walk. Thankfully for the most part Violet can recognize when she's tired at this age, we can visibly she when she's tired as well.   

Q. Can Violet talk?
A.Yes. But with her condition ADCY5 effects the muscle which effects speech at times. Although her speech may be hard to understand at times she loves to talk and sing. She may use her words or even sign to get her point across. 

Q.Violet wears special shoes, why?.
A. Violet wears AFOs (ankle foot orthosis) they help support her feet and ankles, giving her a much better stride. She wears them just about everyday, through out the day. They are comfortable and are molded to fit her exact feet and ankles. We don't get shoes that are made specifically for AFOs we've had a good run with shoe brand Sketchers. They are made wide and when the sole is taken out the AFO fit perfectly with the velcro strap. 

Q.Did Violet hit her milestones?
A. Yes. She hit all her milestones. 

Q. How did you know something was wrong?
A. At about six months I noticed a change in her movements. She had very jerky movements at times. It wasn't all the time just every once and awhile, you'd had to catch it to actual even see the movements. The movements would stop her in the middle of what she'd was doing at times. It was very hard to pin point in the beginning. Looking back now I'm able to see movements, especially in her face before six months. 

Q. How does she do in school?
A. She does great very well in school. Violet is cognitively a typical child for her age. However she does need extra help due to movements caused by her rare disease.

Q. Does ADCY5 effect eye sight or hearing?
A. Hearing and eyesight work great as well. But we do keep an eye for muscles in the eyes. Anything dealing with muscles weakness or strength is a concern with ADCY5.
Q. Where do you get Violets bibs?
A. We order the bibs from amazon. They are called bandana bibs, and they have been a lifesaver.

Q. Does Violet see any specialist?
A. Absolutely! We have such a great team of specialist.

Q. Does she see any therapist for her condition?
A. Yes. Therapy has been a staple in our schedule since the beginning, before we ever had a diagnose. At leases five days a week. I want to do everything in my power to give her a good start and I think we've done well. I can't say enough about the team we've had past and present. We've been so blessed.  

Learn more