Life-Changing Surgery for Evelyn Smith

Meet Evelyn

Our sweet Evelyn...the minute you meet her, you can sense something extra special about her that goes beyond that angel face and those stunning blue eyes.

She is a special spirit with a significant challenge, yet you would never guess it from her infectious smile and happy can-do demeanor. We went through a lot to bring her into this life and it seems we will go through a lot to help her live it.


Evelyn's Rare Condition 

Since she was a year old, we had a sense that something wasn't normal in Evelyn's development. After multiple tests and specialist assessments, we finally got a diagnosis around the age of 3--Charcot Marie Tooth Disease Type 2Z. Something we had never heard of up to that point. 

C.M.T. is a degenerative hereditary neuromuscular disorder that mostly affects the nerves and muscles in the extremities but typically doesn't show symptoms until adulthood. Her rare type, however,  appears at a much earlier age and in many cases, will result in being confined to a wheelchair by her mid adult years. It also typically means multiple foot and ankle surgeries throughout her life. 

Being that Evelyn is so young and still developing, we've done all we can to put off that path of surgery by trying multiple therapies, but at the rapid rate her condition is degenerating, we've determined we can't delay it any longer. 



The Next Big Step

You can imagine how this next step weighs heavily on our hearts...wanting to be certain we are doing the right thing for her and wanting to ensure the best possible outcome. It could mean a major improvement in her quality of life now and down the road! 

But so much is still unknown and uncertain in her situation, and it hasn't done a great deal for our peace of mind when we get differing and unsure opinions from multiple experts who have never seen a case like hers before.

Yet we have continued to move forward in faith the past few years, doing all we can as her parents to give her the best life possible, and having to surrender the rest into God's hands. Looking back, we have NO doubt that He is involved in the details of our lives, eventually leading us to a world renowned orthopedic surgeon in California with more confidence and experience helping CMT patients than anyone we had met before. 

It has given us great hope and a surety we have been longing for!! 

It could mean less foot and ankle pain for Evelyn, and not having to wear AFO braces 24/7. Nor falling down all the time because of unstable feet and too big of shoes which are necessary for the braces. It could mean she would be able to go barefoot at the beach or pool, and RUN better and PLAY more, as all kids deserve to. 


We Need Your Help

But having the surgery done in California as opposed to our home state of Utah gives us a great logistics problem. 

This surgery will require a long and difficult recovery period with multiple follow up visits and multiple leg castings. We didn't want to put Evelyn through numerous trips back and forth between California and home, especially after a painful surgery! 

So after some thought and prayer, we determined the best thing for her would be an extended stay of 8 weeks for our family in California during that time. But living out there will come with a huge expense on top of an already expensive procedure.  Evelyn is worth whatever sacrifice it takes on our part, but between the medical bills, Randy traveling back and forth for work, and all the living expenses, we estimate it will exceed fifteen thousand dollars, which is an unanticipated financial burden. 

We could really use some assistance, and appreciate every effort in her behalf, no matter how great or small. Even just your added prayers for her would mean the world to us! Thank you so much for listening and for your support!