Friday, 9 January 2015

The time is drawing near

Evelyne had a spinal appointment this week. We have been plodding along since last winter with the current brace, but can tell she is growing more uncomfortable. Evie has had a few issues with redness and pressure on the point of her kyphosis, and occasionally issues with pain, but it's been pretty non-eventful. Every time we see the specialist we get asked "...and how old is she now?"... with the underlying question being "is she old enough for growing rods yet?". This time was no different, however, I think I knew that now Evie is aged 6 we are getting closer. 

They first mentioned surgery when she was 3, and we have persisted in casts and braces for the past 3 years to try to hold off until she is bigger. Basically, the older/bigger they are, the less complications and the more successful the surgery.

The specialist is wanting to try another brace design first, to see if we can hold off slightly longer, however it looks like surgery will be in the near future rather than the distant future. In his words "I'd rather put growing rods in an 8 yr old than a 6 yr old, however we have done well to be putting them in a 6 yr old rather than a 4 yr old". We have a brace review at the end of January to discuss options for a new design which might help, however it is clear surgery is not too far away.

Evie, brace free, with her cousin Lydia
One positive is that it looks like she is eligible for Magec rods - magnetic growing rods. This means she will not have to have surgery every 6 months, but the rods can be lengthened via magnets. I wrote about it here over 3 years ago when I heard of it, hoping it may be an option for Evie. 

I am nervous for what the future holds, but I trust our specialist and his experience, and I am happy with how long we have managed to delay surgery so far.


  1. Hello. I believe I've written to you before, but I just came across this blog again and felt like I just had to message you! I'm a 21-year-old girl from Chile and was diagnosed with Beal's when I was about a week old. I hope this doesn't sound too weird, but I think I even look a lot like Evelyn, physically (it probably has to do with the whole phenotype thing). Anyway, I just wanted to let you know that I'm sure she'll be okay. I had to wear a brace for 13 years and had surgery multiple times, and am currently going to college and seeing friends often and traveling and getting to know the world and lovely people and also myself. She's incredibly lucky to have such incredible people in her life and so much support. Just make sure to keep giving her love!

    I just need to ask you one thing: please talk to her. Lots and lots. Even though I'm doing perfectly physically, I didn't have anyone to talk to about how I was feeling at all throughout my life (and hence this entire process), and ended up having 'mental issues', or whatever you'd like to call them (depression, an eating disorder, anxiety). Just be with Evelyn and ask her how she's doing and how she's feeling and talk to her about emotions ('good' AND 'bad' ones), and so on and so forth. I'm not trying to scare you at all, please don't think those are my intentions. I just want to make sure that that lovely smile she has never leaves her face.

    Thank you for sharing her story

  2. My name is Pablo Sanchez. I'm from Argentina, now I have 32 years. I found this blog looking over my illness, which is the same as having your beautiful daughter. I am trying to contact people who have my disease since being rare we support each other.

    Despite all the bad forecasts, at four years of age can begin to walk normally. I have been an athlete, basketball and field hockey. At ten years old I wanted to play the keyboard and with all my heart I succeeded. At twelve I bought my first Gutarra, and she was the one who got me move forward and make me feel a person equal to the others. I am a musician and sound technician. I've played in big and small stages of my country. When I started high school tried to not make it and I chose the TECHNICAL mode; where one has to work with hand tools (carpentry, for example). Not only finished but always approved of exelentementa the materials of this type.

    I am currently a professor of mathematics and taught carpiteria and electricity in technical schools.

    Excuse my English, do not know much and I'm writing this with a translator.

    Greetings, Pablo Sánchez.

  3. As i mentioned in a previous commebt My 2 year old daughter also has beals. I would love to contact you.

    1. Hi jami. If you comment with an email address I can respond. I won't publish it here though :)

    2. My daughter has a brace for her scoliosis and we are having problems finding clothes that work with the brace, I was just wondering what you do for Evelyn. I love her name by the way. My daughter's name is addilyn and she actually kind of looks like your daughter. :) I do have more question for you but would rather ask through email. You can email me at