Princess Leora Fights Rett Syndrome

On December 11th, 2018 we received devastating news that Princess Leora has Rett Syndrome, a rare non-inherited genetic postnatal neurological disorder caused by a random mutation of the X chromosome called MECP2 gene. It occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of their life. It takes away speech, the ability to walk, eat, fine motor skills, and purposeful use of their hands. It may may also lead to breathing difficulties, arrhythmia, and scoliosis. This disease causes so much more.

The hallmark of Rett syndrome is near constant repetitive hand movements while awake. There is NO cure. You’re told to do the different therapies PT, OT, Speech/Language, Feeding, Aquatherapy, and Hippotherapy to help her muscles and maintain the mobility and current abilities she has along with taking medications or alternative treatments for the seizures and anxiety. Many of the therapies and doctors are not covered by insurance. I continue these therapies because they are necessary and it gives Princess Leora the best chance at a quality of childhood and adult life.

Princess Leora regained some of her speech back and she’s working really hard to continue to make progress with talking. She still walks and she has seizures along with anxiety issues. Many Rett girls do not regain talking and may not walk. Her hand use has decreased over time and with the help of her compression gloves she can use her hands some these cost $1200 a pair and she has to get a new pair every 6 months.

My world was flipped and it’s still sinking in as I come to terms with this. It was good to finally have answers as to what was wrong with her and why she had changed dramatically starting close to 3 1/2 years old. Princess Leora is a very happy, smart, funny girl and her smile lights up a room.

These funds will be used to purchase the appropriate medical equipment and medical needs that our insurance will not cover, and the therapies that she needs along with gas and travel expenses to help Princess Leora on her journey with Rett Syndrome. Princess Leora and I travel every 6 months to Texas Children’s Hospital in Houston, Texas to see her team of doctors at the Rett Clinic. We also have to drive 5 hours away every 6 months to get fitted for her special gloves.

Princess has been in a new therapy since January 2021 and it’s costly. It cost us $125 a week out of pocket and this is with us having medical insurance. We’d like her to continue it as we see a difference . This is in addition to her weekly Speech therapy, Physical therapy, Hippotherapy, occupational therapy, and feeding therapy.

Last but not least we would like to grant one of Princess Leora wishes that are costly due to it needing to be adaptive. A wishes of hers is to have an bike that cost $3600-$5000. What kid doesn’t want a bike? Due to cost we haven’t been able to fulfill this wish of hers. She would be very grateful. I don’t expect to get all that we are asking. I do thank you all for the donation we have received so far.

Thank you for reading Princess Leora story. We have a very long road ahead and needs all of the help & prayers we can get.  We are grateful for any and all monetary contributions. If this is something that you cannot contribute to all we ask is for you to pass on the link and keep our family in your prayers. All proceeds will go to Princess Leora’s fight!

With Love,

Rozita D.