Her nominator writes “Hi Heather, My name is Ilona and I would like to nominate my grandaughter Illyra for your memorial princess session.
Illyra has Williams Syndrome or WS, (also called “Pixie-ism”) a chromosome deletion which includes developmental delays, cortical visual impairment, heart and vascular issues, and the inability to make the protein elastin. (This is a protein responsible for making our arteries, veins, cartilage and tendons flexible) From the Williams Syndrome Association website: “Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.”
What Illyra suffers from pales in comparison to what she is.
She is friendly warm, caring and kind. She values interaction with people above all else. She is a superhero, princess and fairy by turn, and her red lame’ cape, fairy wings, and tutus are the only possessions that seem to matter to her. In fact she rarely is seen without at least one of them on, and often all three! As I was doing a bit of research for the writing of this nomination I stumbled across an interesting article that struck a chord with my own experience of people with WS.
Williams Syndrome: the Possible Origin of Elves in Folklore
The Wonderful, Kind, and Loving Condition of Williams Syndrome Could Indeed Explain the Origin of the Elf by Roz Zurko,
The facial characteristics for a person with Williams Syndrome are very similar to the characteristics of that described in an elf. A nose with a flat bridge and turned up to a point is common, as well as a wide mouth with full lips and a huge smile. One of the most predominant features of Williams Syndrome is a starburst in the iris of the eye. This white lacy pattern in the iris can look like a twinkle coming from the eye.
People with Williams Syndrome also have very endearing personalities. They are extremely polite and have unique strength in expressive language skills. When engaging in conversation or just listening they exhibit a hyper focus of their eyes on the person they are conversing with. Unafraid of strangers, they will most likely strike up a conversation with anyone. With all of these characteristics, this person has almost a magical, saintly presence about them. They are very uninhibited and act with everyone as if you are a beloved family member. The world would be a wonderful place if there were more such personalities such as those possessed by people with this syndrome. Taking all of this into consideration with the features, characteristics, and personalities of William Syndrome, this may have been where the folklore of elves started from. Many different cultures have written about elves and although they differ in origin, there are common similarities. Helpful, kind, smiling, laughing and with a twinkle in the eye are just some of the common characteristics of elves shared in the stories from around the world.
When I read this, I instinctively knew there was a large portion of truth in it. My granddaughter is an elf!
Struggling to put all that Illyra embodies in written form( and not being much of a writer myself) I asked my daughter to send me a few words to include in this nomination and what I received from her was so true and so right, and hit me so hard, that I deleted my paltry efforts at explaining who Illyra is and why she deserves this opportunity and decided to let her mothers words stand on their own. My daughters words:
“Illyra does not understand hatred or evil hearted people, it’s part of her, in her genetics. She can only understand other people through love and beauty. Music is her language, it’s how she can relate and document the amazing stories in her head. She shares herself openly, readily, not understanding others hesitation or fear of those unknown. However, with pure innocence, and empathy, she seems to break the toughest glares, the strongest indifference, down into real and honest smiles from everyone she meets. You see, you can’t show anger or hatred when you’re around someone who just simply cannot see it.
She feels deeply, and this is her greatest weakness and strength. She struggles with small things we take for granted, buttons, switches, but she is brilliant when it comes to bringing out the best in everyone around her.”
I could not have put it any better. I hope you will consider Illyra for this amazing opportunity, and I want to thank you on behalf of the winner (whoever she may be) for donating your time and expertise to make little girls dreams come true!
Sincerely, Ilona AKA ‘Noni’ ( Means grandma)”
Ilona is RIGHT. her baby granddaughter IS an elf! Illyra (pronounced IllEEra) is sweet, loving, bouncy, and really fun. We walked a lot thought the woods for this session, and being an overcast day there weren’t a lot of gardens visitors out to break the spiderwebs. We kept running into web after web and from behind me she pipes up “I hate spiders!” and right after she amends it and says “No, I don’t.” and her mom says “You don’t hate anything, do you?” and she chirps “No!” She loves her brother, she plays the keyboard and makes up her own songs. I don’t think you could ever dislike someone like Illyra, she simply possesses no qualities that are negative.