My Fundraising Page!

“Rett Syndrome takes away a girl’s ability to speak, walk, crawl, and use her hands, but it doesn’t take her spirit. Rett Girls are STRONG, BRIGHT, BEAUTIFUL, and the ones who inspire us to fight with every drop of energy we have.”

Thank you for supporting our team in honor of Kenzie and Kaylie, and over 350,000 other girls and women worldwide battling Rett syndrome every single day. Our team will be participating in several races and fundraising events throughout this year to support GP2C and their partner medical research foundation, Rett Syndrome Research Trust. Hand in hand these two organizations are working tirelessly to secure the first ever genetic therapy clinical trials for Rett syndrome. Science is moving rapidly, and funding is crucial. Pending FDA approval, trials could begin within a year. Our hope is real, and we appreciate your generous support, love, and prayers as we push forward on this journey. Learn more about Rett syndrome at GP2C.org or RSRT.org, and share our story far and wide to help spread awareness to end Rett syndrome.

Our Story:

Kaylie and Kenzie are our precious identical twin daughters with Rett Syndrome. They were born perfect and healthy on July 19, 2013, and left the hospital 2 days later without any time in NICU, which is very rare for identical twins. We were of course thrilled and full of joy just imagining the amazing life these two special sisters would have together. Both girls were such good babies, Kenzie tended to be more calm and content, while Kaylie was spirited and always busy. The girls continued to thrive and grow for the first 9 months of life just as expected, and then suddenly progress started slowing and behaviors started changing for Kenzie, meanwhile Kaylie remained her spunky little self and continued right on track for development. It became like a science experiment that we were observing, but had zero control of the outcome. Our easy going, calm and patient little Kenzie began screaming day and night. Her personality changed, and she became overwhelmingly irritable and seemed to be always in pain, but doctors never could identify a problem.

By one year of age, Kenzie was quickly falling behind in meeting milestones, and we began searching for answers. Kenzie started physical therapy, and got eye glasses to help her regain control of her eye muscles which had suddenly become very weak. Doctors told us to be patient and assured us she would catch up. However, by 2 years old, Kenzie had only reached 9 month milestones and was still not walking or saying any words despite over a year spent in weekly therapy. Kenzie also began constantly wringing her hands, and chewing on her clothes. She started losing interest in holding toys and her sippy cup. Despite all of these symptoms, blood tests and MRI results came back normal. She was diagnosed with benign congenital hypotonia, and more therapy was prescribed. It was puzzling, because Kaylie was still continuing to progress and remain on track for meeting milestones with only a mild speech delay. Finally, after months of waiting and searching for answers, genetic testing revealed that Kenzie was positive for the MECP2 mutation causing the devastating genetic neurological disorder, Rett Syndrome. Since Kaylie and Kenzie are identical twins, doctors recommended testing for Kaylie, and test results showed that she had the exact same mutation, C.710delG, causing Rett Syndrome.

We prayed, and hoped Kaylie would somehow remain protected and unaffected by the mutation, but like a ticking time bomb, Kaylie's regression with Rett began 6 months after testing. We watched her slip away, knowing that Rett was taking over. At age 3, Kaylie lost all of her words, began constant hand mouthing, and began displaying other behavioral features of Rett. And just like that, the lives of the two perfectly healthy baby girls we brought home from the hospital were drastically changed forever. They faced a lifetime of disability and would require lifelong 24/7 care. We were heartbroken and full of questions, unsure of what our new life would bring; unsure of what Rett syndrome would take next from the girls.

While both girls have the same mutation, they each struggle in very different ways. Rett is vast and wide in its symptoms, and its destruction is devastating. First Rett sneaks in and causes behavioral changes and steals away the ability to have purposeful hand use; it takes away the ability to talk, it affects gross and fine motor skills and eventually it can take away the ability to walk, and that’s just the beginning.  As Rett progesses, more symptoms take over: seizures, abnormal breathing patterns, severe anxiety, sleep disturbances, irregular heartbeats, gastrointestinal issues, difficulty swallowing, scoliosis, and the list goes on and on.

Rett syndrome is absolutely horrific and relentless, but our family is committed to remaining strong while doing all we can to support finding treatments and ultimately a CURE for Rett Syndrome. We look forward to the day our girls can run, play, talk, sing, and do every single thing that other girls do. We look forward to the day when these two beautiful sisters are cured, and we will not give up until this is accomplished. 

With hope, optimism, and gratitude,

The Morell Family 

$0.00

achieved

$1,000.00

goal

of your goal reached

My Supporters

There are no recent supporters to display.

There are no top donors to display.

My Teammates