Reverse Rett with Daphne: 2019

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2018/2019 for Daphne has seen some incredible highs and lows. One thing for certain, is when preparing things like this, you realize you only document by photo, the highs. In all you learn about Rett Syndrome, I am thankful that we have an abundance of photos of this amazing kid, smiling. She breaks our heart!

In 2018, we had the family move into our new, single level ADA friendly home - a place where we can optimize Daphne's life for the long run. We celebrated the arrival of baby brother Dean Calvert. My word, how Dean and Daphne adore one another!

In 2019, we took the whole family, Dean and all, to England for a wedding, celebrating two close friends tying the knot. We got the chance to see lots of friends and family. Daphne also got her first opportunity to attend the Rett Clinic at Oregon Health and Science University, which was as good as we had hoped it would be.

Now, those were some amazing highs. The lows and challenges, I will review quick but not detail too much.

Insurance battles to get therapy....not only just to get therapy in WA (where we live), but to also get more than the allowance of 25 therapies for the year, which would cover physical therapy, speech therapy, occupational therapy. Most kids we read about with Rett in other states, get 4 sessions a week covered by insurance - we were struggling to get 1 every 2 weeks. Screaming.....Lord the screaming. High pitched, break glass screaming - albeit happy screaming so we can't complain too much. Thankfully this has lowered! Sleeping - few and far between are full nights sleep, but we finally were prescribed a sleep medication that the pharmacist denied our access to because of Daphne's age. She now has it, and she gets better sleep, which improved all aspects of her life. This includes her attitude in the day, her eating, physical therapy, playing and general interaction. A massive component!

This year, our goal is again $20,000 - and WE WILL BEAT IT! Last year we got so close and we're thrilled with reaching 89% of the same goal ($17,877, provided by 152 supporters). This year, we will meet or surpass that goal, with all funds going to Reverse Rett. Human clinical trials are on the cards now, and with $8m left to raise, of the original $33m goal made in 2017, hopefully 2019 will bring more supporters to the community and we can see incredible things happen in the near future.

Thank you for your continued support. Thank you for continuing to raise awareness. Thank you for helping us Reverse Rett.

Love, Daphne & the rest of the Calvert Clan!

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive research to a cure for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (3)

  1. Anonymous 
    3 days ago
  2. Christine Calvert 
    1 week ago
  3. Victoria Bain 
    1 week ago

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