Kyra was born premature at 29 weeks old with bruised feet (severely swollen and blue/purplish colored), a condition diagnosed as Klippel Weber Trenaunay Syndrome, (Lymphadema associated with vascular malformations in several extremities). This is one of the rarest diseases along with many, similar to Parks Webber Syndrome. This condition is life long, permanent and has altered her everyday life in a myriad of ways; finding clothes, shoes, etc. is an obstacle for her and heart-breaking for us. The only temporary solution is compression stockings and a compression pump.

She has had many surgeries and sclerotherapy, to remove excess tissue and cysts that are very painful. If I could cut my legs off, I would do it without hesitation, so that my baby girl could live pain-free and like other normal children who do not suffer from rare diseases. All we can do is pray, hope for better days and maybe consider more surgery.

Thank you for inquiring about our story, and have a blessed day!

2 thoughts on “Kyra has Klippel Weber Trenaunay Syndrome and Mom Wishes for Her a Pain-Free Life”

  1. MANTER CONTATO COM O NOSSO BLOG PARA DIVULGAÇÃO CONJUNTA

  2. Marie Adarmes says:

    Thank you for allowing us to share our story. We are thankful for your caring and publishing our story . Kyra and I look forward to adding the bumper sticker and she is excited to recieve her bracelet that is hand made from caring people like some of our friends also have in common , rare diseases. May God fill your hearts this Holiday Season and hope your days are Blessed. Merry Christmas. It feels good to know there are caring people in this world ; )

    Marie & Kyra

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