I bought Ryley a new top on the weekend. It was a size 4. When I put it on this morning, it was a bit too small. I couldn't believe it! I am guessing that it is just a very small size 4, but all of a sudden I have found that I have a growing boy.
For all of his life Ryley has been classed as FTT (Failure To Thrive). At first, it was because no one could explain why he wasn't growing, then it became a label that was listed under the comorbitities of his syndrome. Now I am beginning to wonder if he might actually lose that label one of these days.
One of the main characteristics of Wolf-Hirschhorn Syndrome is slow growth or, as it is usually referred to, FTT. It is actually incorrect of doctors to refer to kids/adults with WHS as FTT. It is far more useful to use the terms 'slow growth' and 'short stature'.
And here I am again talking about the use, or rather misuse, of words....!
There is a growth curve chart that is specifically for children with WHS, although many aren't aware that it exists. I will have to dig out the link. It was developed a couple of years ago and Ryley was part of the study that measured growth in kids with WHS up until the age of 4.
What was found, from what I can remember, is that children with WHS do follow a growth curve regardless of whether they are fed artificially or orally. It was interesting to note that even the kids who were 'pumped' with the correct amount of calories, still didn't grow much quicker or bigger than those who ate orally.

Ryley has put on 500 grams in the past two weeks, which is due to us increasing his calories on the Ketogenic Diet. Since starting the diet, he has gone from 10.7kgs in weight to a whopping 13.4kgs. This weight gain has taken nearly a year, but is just HUGE! He is now also 98cms tall, which I think is a height gain of nearly 10cms!
Before he started the diet, he hadn't gained any weight in nearly 2 years, but had grown taller. Most people with WHS are tall and very thin. This is typical of the syndrome.

It is very exciting finally being able to buy bigger clothes for Ryley. It has taken 7 years, the insertion of a PEG and the Ketogenic Diet to finally have people tell us that he has grown (because it is actually obvious now)!


  1. That is all so wonderful! ... and really encouraging to think the diet is actually working.
    Of course, he is also a superkid!


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