A Cure for Gem

A campaign by: Daniela & Michael La Salle / $20,000 Goal
59 Donors
Raised Percent :
76.22%

76.22% Funded
, United States (US)
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“Rainbow” by Kacey Musgraves played as Gemma was born on June 10, 2018. Our hospital room in Houston, Texas was filled with morning light, peace and overflowing gratitude as we held our healthy baby girl in our arms. After three miscarriages and an extremely traumatic delivery of our second child, Gemma seemed like our perfect rainbow baby to close out a difficult season of trying to bring a family into the world.

Any time Gemma fussed as a baby, which wasn’t too often, we played her song and it immediately soothed her. Car rides, bath time, diaper changes, it was our little magic trick to soothe her. We had no idea how much music would mean to her, but even on the first days of life, she showed us a glimpse of how much she loves and needs music in her life. We thought Gemma was a perfectly healthy baby but around a year old, she developed quirky behaviors and developmental regressions and delays.

Gemma was diagnosed with Rett Syndrome on March 25, 2020. Rett Syndrome is caused by alterations in a single gene, MECP2. It impacts every aspect of life. The diagnosis completely rocked our world that day and still does four years later. Gemma was just a few months shy of two years old when she was diagnosed. For her second birthday, we decided to fundraise for Rett Syndrome Research. We raised more than $10,000 that year, what better gift than a cure for our girl. Research has shown Rett Syndrome to be reversible in animal studies. There is lots of promising new research for gene replacement programs taking place for Rett Syndrome today, including Taysha Gene Therapies, which is aiming to launch human clinical trials for gene replacement this year. There are now eight biopharmaceutical companies that are currently developing Rett Syndrome therapies.

Gemma’s fourth birthday seems a bit tougher to process than the last two birthdays. Two and three years old still seem so young. But four is the time when you can donate the baby gear.  We should be donating the strollers, but we are researching new strollers to better fit her now. It feels like we have missed out on so much, but it also feels like a blessing to have so much hope for a cure while Gemma is still so young. As much of a challenge life can be for Gemma, she is still so happy. She smiles every single day. With or without a cure, we will do our best to keep her smiling.

Gemma just finished her first year of preschool. It was daunting to drop her off that first day, but we put faith over our fears and we believe it was the right decision. Gemma can’t tell us her feelings with her words, but her teacher did a great job of sending us photos and giving us little glimpses of her days. While it was difficult for Gemma to sit down to learn about colors and shapes, her social development grew tremendously. By the end of the year, she really enjoyed playing with friends on the playground. We are very grateful that she has a school with lots of resources and support.

Every year brings new challenges with Rett Syndrome. We don’t know what to expect for this new year, but we try to just have hope. Hope that we’re doing enough, hope that she’s happy. We do have hope that one day she will be able to use her hands again. One day, we hope she will speak again. We hope that we can find grace on the days when it feels like too much and find joy despite it all, just like she does.

It seems like we are always asking for money from our friends and family, and that doesn’t feel good. But we have to try for Gemma. For all the families facing similar challenges because of this devastating condition. We are so grateful for all the donations, big and small.  Rett Syndrome Research Trust is dedicated to advancing research for a cure. The CEO and others within the company have children with Rett Syndrome. All the money that has been donated to RSRT is making an impact on the latest research. Next year, we hope to host an in-person event. This year still feels a little chaotic for us, but we are doing our best to help our little rainbow girl. If you are able to donate or share this campaign with at least four people in honor of Gemma turning four, it would mean the world to us.

Thank you,
Michael and Daniela

*For more information about Rett Syndrome and Rett Syndrome Research Trust, please visit reverserett.org

Donation Amount Minimum amount is $ Maximum amount is $10000
Donation levels

$1000

Gemma's Hero

8 Donors

$500

Gemma's Star

0 Donors

$250

Gemma's Tribe

7 Donors

$100

Gemma's Hope

24 Donors

$50

Gemma's Admirer

10 Donors

$25

Gemma's Friend

10 Donors

Name Donate Amount Date
Hector Arias Fraga $250.00 June 11, 2022
Stephanie Medina $25.00 June 11, 2022
Frank La Salle $1,000.00 June 11, 2022
Angela Deluca $100.00 June 11, 2022
Rebecca Hensley $100.00 June 11, 2022
Briel Hernandez $50.00 June 11, 2022
Frank Renwick $250.00 June 11, 2022
Nuccia Asaro $250.00 June 11, 2022
Christina Lewis $25.00 June 10, 2022
Angela Zangari $100.00 June 10, 2022
Mitchell Thorp Foundation $2,200.00 April 13, 2022
M M Tenney $100.00 March 01, 2022
Laura Vandegrift $25.00 February 04, 2022
Frank La Salle $1,000.00 December 29, 2021
Åse Helene Forfot $25.00 December 02, 2021
Susan Lucas $250.00 December 01, 2021
Ashley Collins $25.00 December 01, 2021
Bibi Luko $50.00 December 01, 2021
Erika Olayan $50.00 December 01, 2021
Nuccia Asaro $100.00 December 01, 2021
valerie serrano $25.00 December 01, 2021
Kristin Trahan $50.00 December 01, 2021
Eliana & Luca La Salle $50.00 November 30, 2021
Michael La Salle $1,000.00 November 30, 2021
Alex Creelman $100.00 November 30, 2021
Andrea Ellis $100.00 October 02, 2021
Dan LaSalle $2,000.00 September 28, 2021
Rick Dickinson $100.00 June 16, 2021
SG Plastering $1,000.00 June 16, 2021
Sharon Gates Grundstrom $50.00 June 15, 2021
Sylvia Asaro $50.00 June 15, 2021
Anonymous $50.00 June 14, 2021
Marialisa Grassa $25.00 June 14, 2021
Anonymous $100.00 June 14, 2021
Jonathan Ritchison $100.00 June 13, 2021
Vicky Trask $100.00 June 12, 2021
christopher grassa $100.00 June 12, 2021
Susan Lucas $100.00 June 12, 2021
Cristina Asaro $100.00 June 11, 2021
Briel Hernandez $100.00 June 11, 2021
James Alberts $50.00 June 11, 2021
Justin LaSalle $1,000.00 June 11, 2021
Maria and Paul Crimi $30.00 June 11, 2021
Kim Phillips $100.00 June 11, 2021
Angela Zangari $100.00 June 11, 2021
Anonymous $100.00 June 11, 2021
Anonymous $100.00 June 11, 2021
Eliana & Luca La Salle $88.00 June 11, 2021
Nuccia Asaro $200.00 June 11, 2021
Russel Wurts $250.00 June 11, 2021
Rachel Falk $25.00 June 10, 2021
Leslie Smithwick $100.00 June 10, 2021
Angela DELUCA $100.00 June 10, 2021
Holly Alves $25.00 June 10, 2021
Dan LaSalle $250.00 June 10, 2021
Frank B La Salle $1,000.00 June 10, 2021
Darin Blue $100.00 June 10, 2021
Hector Arias $250.00 June 10, 2021
Kristen Sacco $100.00 June 10, 2021