For1Day 2018

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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 (72)

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

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