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Cure for Me, Cure for MECP2 Duplication Syndrome
My daughter, Elli, is a special needs child. After 7 years, it still is so difficult to admit it. I am frustrated, angry, scared, sad, jealous, tired, blessed and grateful at the situation. I am overwhelmed with fear every day as I think about what the future holds for Elli. I feel guilty when something other than Elli consumes my life. But, for all the things Elli has given our families, I have to give back and sharing her story is a start.
Elli is diagnosed with MECP2 Duplication Syndrome, a rare genetic disorder where extra MECP2 protein disrupts the neurons in her brain. It’s devastating to think Elli’s best years were when she was 4. She could eat puree and drink some liquid, sit unassisted and even stand for a few seconds. She was alert, awake and happy. Now, frequent seizures have affected her. She is now 100% g-tube fed and requires breathing treatment and urine catheter every 4 hours. She can hardly keep her head up and is mostly laying down.
They say kids change your life, and Elli certainly did. Elli is indeed a blessing and we are so thankful for her. But it kills me to know that she will not be able to enjoy the life of a typical child. Every night when I put her to sleep, I reflect on the day and ask myself if I have done enough for her. The answer is usually no.
A recent clinical study has shown the possibility of reversing this syndrome. I can’t tell you what it means for Elli if her duplication is reversed, but I know I want to find out as soon as possible.
That is why we started the #for1Day fundraiser. Our mission is simple. We want to raise money to fund ongoing and new research to find a cure for MECP2 Duplication syndrome through RSRT Trust. Our vision is that One Day, Elli will be able to enjoy the simple things in life.
Please fight with us so that one day Elli’s day is as bright and sunny like ours.
Please help us raise funds so that one day Elli can stand hand in hand with us.
IG - #For1Day
FB - For1Day
My daughter, Elli, is a special needs child. After 7 years, it still is so difficult to admit it. I am frustrated, angry, scared, sad, jealous, tired, blessed and grateful at the situation. I am overwhelmed with fear every day as I think about what the future holds for Elli. I feel guilty when something other than Elli consumes my life. But, for all the things Elli has given our families, I have to give back and sharing her story is a start.
Elli is diagnosed with MECP2 Duplication Syndrome, a rare genetic disorder where extra MECP2 protein disrupts the neurons in her brain. It’s devastating to think Elli’s best years were when she was 4. She could eat puree and drink some liquid, sit unassisted and even stand for a few seconds. She was alert, awake and happy. Now, frequent seizures have affected her. She is now 100% g-tube fed and requires breathing treatment and urine catheter every 4 hours. She can hardly keep her head up and is mostly laying down.
They say kids change your life, and Elli certainly did. Elli is indeed a blessing and we are so thankful for her. But it kills me to know that she will not be able to enjoy the life of a typical child. Every night when I put her to sleep, I reflect on the day and ask myself if I have done enough for her. The answer is usually no.
A recent clinical study has shown the possibility of reversing this syndrome. I can’t tell you what it means for Elli if her duplication is reversed, but I know I want to find out as soon as possible.
That is why we started the #for1Day fundraiser. Our mission is simple. We want to raise money to fund ongoing and new research to find a cure for MECP2 Duplication syndrome through RSRT Trust. Our vision is that One Day, Elli will be able to enjoy the simple things in life.
Please fight with us so that one day Elli’s day is as bright and sunny like ours.
Please help us raise funds so that one day Elli can stand hand in hand with us.
IG - #For1Day
FB - For1Day