Melaina Santos Fund



Melaina was born in July of 2008 and was immediatley adored by her two-year old brother. Her beautiful smile and eyes are what caught everyone's attention. Her giggles were infectious. Her climbing the stairs and beginning of words like "bye-bye", "daddy", and "store" were emerging and grew with her. However, as she turned one we slowly started to notice a lack of progress in her speech and motor skills. Words were rare, hand movements such as hand wringing, arm flapping, hand mouthing became frequent; however, her smile, bright eyes, and sociable nature continued.

April 23rd, 2010 is our d-day (diagnosis day) We will always remember the words Rett Syndrome. It is the day that rocked our world. The day where a million questions filled our heads. The day that the internet became our worst nightmare as we searched for answers filled with information about Rett Syndrome. We were unsure what to expect for Melaina. 

Rett Syndrome is a postnatal neurological disorder. Symptoms appear after an early period of normal develelopment until six to eighteen months of life, when there is a slowing down or stagnation of skills. Rett Syndrome has taken away Melaina's ability to speak, hand use, or do any physical activity independently. Additionally, Melaina suffers from seizures and we are always prepared for the Rett monster to rear its head. 

The sweet nature of Melaina lives in her heart and shines in her eyes. She smiles, loves to socialize, loves to communicate, loves music (Bruno Mars), loves to dance, loves food, and she yearns to do all the things that a normal girl likes to do. Every donated dollar will be used toward...

1. Melaina's adaptive bike to give her the freedom, independence, and hope to ride with her family and friends. Check out a video of a bike Melaina test drove at the Abilities Expo. https://vimeo.com/102197356.

2. Melaina's medical fund for outstanding medical bills, therapies, medication, equipment, and supplies.

3. Lastly, any portion exceeding our goal will go directly to the International Rett Syndrome Foundation (IRSF) whose mission is to fund research for treatments and a cure for Rett Syndrome while enhancing the quality of life for those affected by Rett Syndrome. To find out more about the IRSF go to www.rettsyndrome.org.

Care and Cure.
The Santos Party of 5
  • Peter & Leticia Korovessis 
    • $200 
    • 82 mos
  • Jennifer Roelke 
    • $40 
    • 82 mos
  • Brandon&Ellie 
    • $50 
    • 82 mos
  • Anonymous 
    • $100 
    • 82 mos
  • Maryna Silchenko 
    • $50 
    • 83 mos
See all

Organizer

Shannon Santos 
Organizer
Lake Zurich, IL
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