For1Day 2018

  • Description
  • FAQ
  • Comments
  • Supporters

Elli has had another eventful year…

She has kept her VIP status on the 11th floor of Children’s Medical Center in Dallas. This is her favorite floor which happens to have the ICU.  For the past 12 months, Elli has spent at least 2 ½ weeks a month there with some combination of UTI, seizures, and/or pneumonia.  The most recent hospital stay was perhaps the most eventful one that we can remember.  Uncontrollable seizures compounded with severe pneumonia and UTI broke our fragile little girl and put her in the most critical condition we have witnessed so far.  Overcome with confusion and fear, we asked FB friends to pray with us.  If there was a bottom, we think we hit it at that moment.

Then the most amazing thing happened.

Father Rex, who presided over our wedding and currently lives in LA, happened to be in Dallas when he read my FB post.  He asked to come to pray for Elli and anointed her with oil.  As Father Rex and his colleague, Father Salvador, prayed over Elli, she opened her eyes and gave us a glimpse of life.  Then, her road to recovery began.

By the time she was discharged, she started to smile and laugh.  That was the first smile and laughter in about a year and a half.  She was visibly more alert and attentive to her surroundings. Once she came home, she resumed her homeschool program.  She also started music and speech therapy on top of her regular physical and occupational therapies.  Her busy schedule ends with a weekly massage therapy from Chelsah.

Meanwhile, we added new regiments to keep Elli healthier.  Apparently, she did not empty her bladder fully so we now use a catheter to help her every 4 hours.  To control her seizures, Elli briefly experimented with a Ketogenic Diet but we discontinued it after 6 weeks after seeing no results.  Instead, we started her on CBD oil (medicinal marijuana) and the results have been extremely positive.

Right now, we are cautiously optimistic this can be her new baseline but we also realize one small misstep can wipe out months of hard work.  Therefore, we are doing everything to keep pushing her to be stronger and healthier.  We try to stimulate her mind to keep developing her brain so when a cure is found Elli will be ready.

So here we are, hosting our 2nd annual #For1Day Fundraiser to expedite the research timeline.

We are here #For1Day so Elli’s life will be warm, sunny, and full of happiness.

We are here #For1Day so Elli will be in hand in hand with Madelyn and William and taking on the world.

Right now, we smile when she cries because that means she is alert and able to express herself.  We cry when she laughs because we are overwhelmed with joy.  We are hopeful that with your help we will all laugh and cry with her.  The past two years, we have raised over $77,000.  This year our goal is to raise another $23,000 to reach the $100,000 mark.  Please help us by making a donation and sharing her story.  Thank you for your generosity and compassion.


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 (70)

  1. Anonymous 
    4 days ago
    $100
  2. SUE LIU 
    5 days ago
    $100
  3. Anonymous 
    5 days ago
    $50
  4. Lun Tsuei 
    4 weeks ago
    $100
  5. Paul McGuire 
    1 month ago
    $100
  6. Sandy Paick 
    1 month ago
    $100
  7. Anonymous 
    1 month ago
    $250
  8. Joanne Moy McGraw 
    1 month ago
    $50
  9. Anonymous 
    1 month ago
    $25
  10. Joe McLaughlin 
    2 months ago
    $100
  11. Anonymous 
    2 months ago
    $50
  12. Kyle Davoust 
    2 months ago
    $50
  13. Ann Do 
    2 months ago
    $150
  14. Gentle Dental PC 
    3 months ago
    $500
  15. Art Frame Expo #101 
    3 months ago
    $500
  16. Alexis & Robert Briggs 
    3 months ago
    $100
  17. Pro Wash & Dry  
    3 months ago
    $2,000
  18. Melissa Howell & Jacob Anderson 
    3 months ago
    $100
  19. Christina Tae Lee 
    3 months ago
    $300
  20. Bernard Hewett 
    3 months ago
    $420
  21. Melinda Melton 
    3 months ago
    $50
  22. Estefania Ortiz 
    3 months ago
    $100
  23. Richard Hays 
    3 months ago
    $100
  24. Karen & Roger Files 
    3 months ago
    $2,000
  25. Clara Choy 
    3 months ago
    $500
  26. Kelsey Ingriselli 
    3 months ago
    $100
  27. Yoonjae Kim 
    3 months ago
    $200
  28. Chen Fei 
    3 months ago
    $100
  29. Jeffrey Abraham 
    3 months ago
    $150
  30. Alice Miller 
    3 months ago
    $100
  31. Chan Park 
    3 months ago
    $250
  32. Anonymous 
    3 months ago
    $25
  33. Shushan Keflay 
    3 months ago
    $100
  34. Jimmy Chang 
    3 months ago
    $50
  35. Thanaporn May Kulthol 
    3 months ago
    $100
  36. Jinju Kim 
    3 months ago
    $50
  37. Julie Hong 
    3 months ago
    $100
  38. Lila Hwang 
    3 months ago
    $100
  39. For1Day Fundraiser 
    3 months ago
    $2,365
  40. Sivia Kim 
    3 months ago
    $250
  41. Abigail Jones 
    3 months ago
    $20
  42. Jungin Kim 
    3 months ago
    $50
  43. Bo Huguet 
    3 months ago
    $50
  44. Rishan Pinkee 
    3 months ago
    $50
  45. Anonymous 
    3 months ago
    $200
  46. Ademola Oguntona 
    3 months ago
    $20
  47. elizabeth kim 
    3 months ago
    $1,000
  48. jung park 
    3 months ago
    $250
  49. lee kessee 
    3 months ago
    $20
  50. chun-yu ho 
    3 months ago
    $100
  51. cynthia stubblefield 
    3 months ago
    $100
  52. KRISTINA yuen 
    3 months ago
    $50
  53. jung park 
    3 months ago
    $250
  54. todd harper 
    3 months ago
    $50
  55. brett bass 
    3 months ago
    $100
  56. Diana Kang 
    3 months ago
    $100
  57. philip chen 
    3 months ago
    $100
  58. holly hughes 
    3 months ago
    $50
  59. Veronica Vazquez 
    3 months ago
    $125
  60. Ashley Circo 
    3 months ago
    $40
  61. wesley wong 
    3 months ago
    $55
  62. Valerie Adair 
    3 months ago
    $100
  63. Heather Wallace 
    3 months ago
    $110
  64. Ron Yuen 
    3 months ago
    $50
  65. linda lee 
    3 months ago
    $150
  66. tyler mobley 
    3 months ago
    $100
  67. Jonathan Crouch 
    3 months ago
    $100
  68. elizabeth kim 
    3 months ago
    $250
  69. Juhee Han 
    3 months ago
    $500
  70. Jennifer Chao 
    3 months ago
    $500

This is a unique website which will require a more modern browser to work!

Please upgrade today!