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Last Christmas, I knew my daughter was getting a “looks like me” American Girl Doll from her Grandma.  I decided that if she was going to have the same brown hair, brown eyes, and even braces for her teeth, it would be really nice if this doll represented everything about my daughter and had a Scoliosis brace, too.  I contacted the “elves” at Orthotic Solutions (where we get her Cheneau brace made), and they agreed to make us one – it came the week before Christmas, and I was so excited! The last step was to make a very (very!) small bodysuit so that the new doll could be as much like my daughter as possible.  When she opened that gift on Christmas day, she was ecstatic about the doll, but she said that the brace and bodysuit were the “best gifts she’s ever gotten”.  Who would have thought that a tiny brace would make such an impact?  Since then, she has used the doll brace to show many girls what her brace and bodysuit are like (I’ve even borrowed Violet – the doll – to explain what I make to a couple inquiring parents).  Violet and her brace have been a comfort to my daughter and, almost a year later, she is still so moved about what Luke Stikeleather and I did to make it a very special friend for her.

Several months later,  I got an email from a representative from The Hospital for Special Surgery about another Mom who was on the same path with her daughter, who is a patient of the Hospital’s Dr. Green, and how the doll and brace were able to help her daughter in dealing with her Scoliosis.  I was able to interview the Mom, Kelly Kirby, via email and she had some really great advice for other parents dealing with the disease.  Kelly tries to empower her daughter with the ability to dress in flattering ways, even though she’s wearing a brace.  She also tries to let her daughter take ownership of her allotted time out of brace every day, and she’s enlisted the help of capable adults at school and other activities to help her daughter into her brace when necessary.  She also feels that it is very important to validate her daughter’s feelings. When her daughter is feeling down, she holds her and lets her have a good cry, and then wisely tells her that, although it doesn’t seem fair that she has to wear a brace, that all kids are dealing with one issue or another (or will be at some point), and it’s just that her brace is a very visible issue.  Kelly and her husband have even taken their mission a bit further, using the doll as an educational tool that they take to their daughter’s school to educate her classmates on Scoliosis.  (I may steal this idea!) The doll has provided a great opportunity to demonstrate what a brace entails, without a patient having to expose their own brace to their friends.  Also, it is a great tool for their daughter to speak out about her illness without feeling too shy or “on display”.

There are a few other aspects that Kelly and I agree on.  First, Kelly Kirby and I agree on the importance of dressing for a brace – both on top of and underneath the brace.  While they have come up with some off-the-rack solutions that work for them, I continue to make it my mission to make the highest quality, most comfortable,  Scoliosis-specific undergarments possible.  But, we both recognize that the most important thing is to keep patients comfortable and compliant, in order to allow their braces to work effectively.   Also, we agree that it’s important to find support – both for the patient and the caregiver.  Girls – young ones, especially – can find comfort in their doll-friends having the same trials as they do.  And, parents can find comfort in reaching out to other parents – something that Kelly said was critical for her in the beginning.  When you get the support you need, you can then turn around and support others.

If you are interested in getting a doll brace for your child, I urge you to contact your brace provider.  Some may be willing to work with you.  We were lucky that we see someone who is so compassionate and caring that he made it so easy for us.  Kelly contacted the company that fitted her daughter’s brace (Biodynamics in NYC) and they, in turn, contacted the company that manufactures her brace, who used the American Girl doll of the owner to fabricate a brace that looked exactly like her daughter’s.  It was a wonderful gesture on their part and your provider may be willing to do the same.  Kelly went as far as to call the American Girl company and plant some seeds, but so far they do not offer such a  product.  However, if you are able to procure a brace from your provider, EmBraced in Comfort is making a limited time offer (until after the holidays) for one FREE 18-Inch doll sized bodysuit or Brace-Tee with a purchase of a regular child bodysuit (or Brace-Tee).  Just email me with your request through my website or comment on this blog post.  Limit one per family.

I will leave you with some photos that my daughter took of her dolls for this article…

Violet brushing her pearly whites.

Violet's friend Kirsten does her hair.

All dressed and ready for the day.

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