Our Dream for Lilly

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Hearing that your child has a rare genetic disorder, is something a parent is never prepared to hear. But that is exactly what happened to our family, when our Lilly was diagnosed with Rett Syndrome in November 2017.

Our story begins 3 years earlier. After a period of typical development our playful, social and talkative toddler stopped meeting her developmental milestones. Between 2 and 3 years old Lilly started losing words and skills she had previously known and started to withdraw socially which resulted in an Autism Spectrum Diagnosis. This year a genetics test revealed Lilly has a mutation on a chromosome that affects the function of the MECP2 gene which is critical in neurodevelopment, otherwise known as Rett Syndrome.

Today Lilly is non-verbal, but that does not mean she doesn't communicate. In fact she can vocalize quite loudly if she wants things a certain way. We are teaching her to communicate using assisted technology. She loves her older brother who is the most patient, kind and loving sibling. She attends kindergarten with a modified education plan and an educational assistant and continues other therapies daily after school and on weekends. Her playful and sweet personality shines through her eyes and her smile. She is our hero.

We worry and fret about the future of our children like any other parents. Our worries now include looking for signs of further regression that is typical in the progression of Rett Syndrome. We worry about her level of mobility in the future, we hope she can continue to use her hands in a meaningful way, we worry about seizure development and breathing problems. Our dream is for Lilly to grow up and have a chance at an independent life, a chance to travel to explore the world, a chance at pursuing her passions and interests. Selfishly we want to hear her speak, to have a conversation, to hear her say I love you with her voice - something she was once capable of doing but is no longer able to do due to Rett Syndrome.

Today we have real hope that our dreams for Lilly will come true soon. Research has shown Rett Syndrome is reversible and potentially curable. The Rett Syndrome Research Trust's strategic plan, Roadmap to a Cure, strives to raise funds for clinical trial research towards a cure for Rett Syndrome. This research is not possible without donations from families and friends of those affected by Rett Syndrome. We would be forever grateful if you chose to financially donate to support research that will help unlock Lilly’s potential. You would also be supporting 1:10,000 girls (and some boys) worldwide who are living with Rett Syndrome and giving hope to many families. Each and every dollar donated will get us closer to a cure.

In love and gratitude,

Aggie, Wil, Nathan and Lilly


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 the development of treatments and cures 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.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (9)

  1. Tanya Jenke 
    6 days ago
    $100
  2. Sharon Ziv 
    1 week ago
    $100
  3. Anonymous 
    1 week ago
    $25
  4. Stephanie Clarke  
    1 week ago
    $25
  5. Pauline Fondeur 
    1 week ago
    $100
  6. Alana Harris 
    1 week ago
    $50
  7. Kelly Pensom 
    1 week ago
    $100
  8. Anonymous 
    1 week ago
    $50
  9. Burnaby Heights Inegrative Health Care Inc 
    1 week ago
    $500

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