Limb Lengthening: The Naughty Words

I’m a strong believer in experiencing everything in life first hand, which includes our dwarfism. Speaking from one adult LP who faced shyness as a child, get him plugged into LPA events, beyond national and regional conferences. One needs to be surrounded by this community in order to experience it. Your child will see, his/her story is not the only one. And the others with the same story of “wishing” to be average height have stories of strength and amazing self-confidence that got them to NOT consider ELL (Extended Limb Lengthening) or the Ilizarov method.

Whether that be through religion or self-actualization or just getting involved in ANYTHING, they learned to overcome their physical and emotional limitations and live life to the fullest as people of short-stature.

It is our right as parents and our children’s right to know about ELL, this is true. But, it is our responsibility as parents to give them every opportunity possible of self-worth as-is. Immersion in LPA is a great thing because he/she will build long lasting friends and a community that will be there for his lifetime.

You can find a lot of facts about ELL and hear a couple of stories from people who have done the surgery. But, if he/she doesn’t fully experience this dwarfism community at this age, he/she will not understand the choice they are about to make with ELL, that will not only affect them, but possibly their children in the future. ELL does not mask the gene that caused his dwarfism.

If anyone has questions about ELL, Gillian Mueller is the adult LP who has had it done. You may have seen her in the media a while back. Dan Kennedy wrote about her in his book “Little People: Learning to See the World Through My Daughter’s Eyes” and interviewed her.

I am only one of many LP adults that have a story to tell and their perspective on ELL. If it helps just one person to read these words, then it means the world to me.

Skimming this paper posted . . .

“Still a hope”? Via a drug for the FGFR3 (Fibroblast growth factor receptor 3) gene?

I’m not going to rant. Just leave with this: either you are happy or not happy with your child with dwarfism. There has been many attempts to “cure” our dwarfism whether it be through ELL or a treatment for achondroplasia via gene therapy. And whether these research papers come from a parent of an LP who’s a doctor or not, you need to find it within yourself to be happy with your child just the way he/she is.

You know, even as an LP parent of an LP and AH child, I can understand parents concerns about their child fitting into the world. Our son is on the 3rd percentile (meaning 3 or out of 100 achons, he is the 3rd smallest) for height on the achon chart at age 5. Then, our daughter is on the 86th percentile for height on the typical scale (Denver Charts). I am on the 50th percentile for height on the achon chart. Genes work in mysterious ways!

So each of my children will ask the question: Why was I born this way? And likely have self-image issues just like anyone else. But, we hope this community in LPA will help provide the love, support and opportunities to squelch those feelings of inadequacy for both of my children.

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