Ectodermal Dysplasias




“If I could wish apond a Star” ....by: Nana(Betty Hall)

Twinkle, twinkle, little star, I wish I may, I wish I might, Have this wish I wish tonight.
I wish I could trade places with you.

If I could find a Genie in a Bottle....
I’d rub that bottle and out would appear , a genie to grant me three little wishes.
I’d wish for you to have hair, as long and thick as can be. I’d wish for a full set of teeth you could see. But I first would wish for a cure from that genie right now.

If I had a Magic wand...
I’d wave it over you and say these words.
Hokis, pokis, make her well. Hokis, pokis, trade places with me.
If I were an Hypnosis...
I’d put you to sleep and when I snapped my fingers you would wake cured and complete.

If I could throw a coin in a Wishing Well...
I’d wish for a future as normal can be.
There’s only one thing that is real and will work....

That’s the Lord up above that hears my daily prayers. I pray for a cure to  heal you right now. I pray for a cure for all the thousands asking God for the same .  I pray for healthy teeth to grow over night and hair as long as you dream of. I pray and I pray, and I know God hears me. I pray for you, my sweet  Granddaughter and know that he won’t let you down! There is no magic in his eyes or tricks up his sleeve. He only ask one thing of me and that is to Believe and lay her Ectodermal Dysplasia at his feet!



This little girl brings so much joy and love to our hearts but it breaks mine to see how much she wants hair and normal teeth. She has Ectodermal Dysplasia.
Ectodermal Dysplasia (ED) is not a single disorder, but a group of closely related conditions of which more than 180 different syndromes have been identified. My granddaughter has a lighter case which effects her teeth and hair. The Ectodermal Dysplasias (EDs) are genetic disorders affecting the development or function of the teeth, hair, nails and sweat glands.
Please take time to contact Congress to help pass this bill. This is so important! Please help the thousands of children and adults including our granddaughter ! Click on the link to help!
This bill will mean that The Dental Insurance will except coverage and stop saying this is cosmetic . Not asking for anything free and no handouts, but to be able to use the insurance everyone is paying for already. Please help. It doesn’t take but a moment to click on this site and answer a couple of questions. 
Thank you, 
From Holly and family


This is our sweet granddaughter and we love her so much! If God would allow us to trade places with her this very minute , we wouldn’t blink an eye of hesitation. Help take action. Help the thousands of children and adults ...Learn how here https://www.nfed.org/

Sharing my correspondence with everyone that has been helping with getting
the Ensuring Lasting Smiles Act (ELSA) introduced in Congress! Now I’m asking again... contact them all again!!!

ELSA is a federal bill that, when passed, will provide MEDICAL insurance benefits for dental care to replace and restore teeth for people affected by ectodermal dysplasias.




 








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