Coffin-Lowry Syndrome- Mathis

Mathis has recently been diagnosed with Coffin-Lowry syndrome, a rare genetic disorder. The incidence rate is 1 in 50,000 to 1 in 100,000. That is how unique our little warrior is!

Because of this condition, Mathis has faced many challenges, and he is only 2... However, they have not stopped him from smiling and being the happiest boy I have ever met, truly! He will be scheduled for cochlear implants surgery in the next few weeks and we are hopeful that this surgery will rock his world and will create endless opportunities for him to experience the world in newer, richer and more exciting ways.

Mathis, along with his proud and very protective big brother and big sister, Kyan and Amelie, is the love and light of our lives, and he has been shining bright since he was born. Our hope is that he will fight on, will continue to amaze us, inspire us and strive.

We love him dearly and are also very grateful to have such a wonderful network of loving, devoted, and caring people who have shown nothing but support and endless love for him. But then again, how can you not love such a sweet, funny, handsome and cuddly little guy?

We ask that you please consider donating to support research for this syndrome and/or help raise awareness to help other children who are diagnosed with Coffin-Lowry and who may not be lucky enough to have the support and resources that Mathis has.

I will be running the NYC marathon on November 5th with the goal of raising funds for the Coffin-Lowry foundation and help research. If you are around, please come and cheer me on!

We thank you for being a part of his life, one way or another. We hope that one day, these beautiful children with CLS will become a more visible group in various communities and that both medical and behavioral research will help improve and support methods of social integration for our very very special little guys!


Sandrine, Cedric, Kyan and Amelie
  • Anonymous 
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    • $125 
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  • Anonymous 
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  • Joshua Gondwe 
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  • Wendy Goldberg 
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Sandrine Nayah 
Potomac, MD
Coffin-Lowry Syndrome Foundation 
Registered nonprofit
Donations are typically 100% tax deductible in the US.
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