All in for Addi

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Our little Addison was born in February 2014. Our family of four that we always dreamed of was complete. She was a very happy and content baby. She progressed normally for the first 8 months, but from there we began to notice changes. Whilst we intervened early with physiotherapy and occupational therapy, Addison began to regress. Things that she could once do like roll over, feed herself and play with her favourite toys were being slowly taken from her. At 12 months, in the absence of a formal diagnosis, we were told that Addi had Global Developmental Delay.  By 18 months we were told that our daughter may never walk, will have limited communication skills and will most likely need lifelong care. Our world was crumbling around us. It was as if all our dreams and hopes for our Addi came crashing down.

We searched for answers and four months before her third birthday we finally received a formal diagnosis. Addi has Rett Syndrome. Rett is a rare genetic neurological disorder.  Addi has never crawled, walked, talked and has lost what little use of her hands she once had. She is constantly affected by bouts of hyperventilation and breath holding and she has recurring sleep issues. We have watched our Addi lose almost all the bodily control that she once had. And this is all before the age of three. The road ahead is terrifying with the possibilities of scoliosis, seizures, eating difficulties, heart conditions and more. Our lives have been changed forever.

There is no cure for Rett at the moment.  However, there is great hope for the 350 000 girls and women around the world living with Rett. Scientists have managed to reverse Rett Syndrome in mice. With your help scientists can bring that cure to our girls. You can help save their lives. Addi is a fighter.  She smiles more days than not and she works so incredibly hard every single moment of every day to overcome the limitations of her body.  We have joined the fight against Rett….will you join us in making Rett history?

James & Daleane Henshall-Howard


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 (50)

  1. Daleane and James 
    8 months ago
    $1,100
  2. Anonymous 
    12 months ago
    $800
  3. Chantal Farella  
    1 year ago
    $100
  4. Mary Roth 
    1 year ago
    $250
  5. Rizqah and Allie Kamedien 
    1 year ago
    $30
  6. Waldimir Rudolph 
    1 year ago
    $50
  7. Shaun Harris 
    1 year ago
    $250
  8. Anonymous 
    1 year ago
    $28
  9. Anne & Pilates Ladies + Friends 
    1 year ago
    $90
  10. Michelle Erasmus 
    1 year ago
    $250
  11. Uma Vijayan 
    1 year ago
    $40
  12. Cornelie Claassens 
    1 year ago
    $50
  13. Thomas Hendricks 
    1 year ago
    $30
  14. Timothy Adams 
    1 year ago
    $12
  15. Deborah Van Doorne 
    1 year ago
    $250
  16. Thirushen Pillay 
    1 year ago
    $50
  17. Dirk Schenck 
    1 year ago
    $70
  18. Willem van der merwe 
    1 year ago
    $10
  19. Rene Adams 
    1 year ago
    $20
  20. Nuhraan Kahn 
    1 year ago
    $150
  21. Julie Ward 
    1 year ago
    $7
  22. Logandree Gounden-Pead 
    1 year ago
    $200
  23. Marienne Vermeulen 
    1 year ago
    $70
  24. Stephan Potgieter 
    1 year ago
    $70
  25. JG Muller 
    1 year ago
    $50
  26. Raymonde van der Scholtz 
    1 year ago
    $50
  27. Lisa Sutton 
    1 year ago
    $20
  28. Marzaan Luttig 
    1 year ago
    $100
  29. Cornelie Claassens 
    1 year ago
    $50
  30. Ruchir Severaj 
    1 year ago
    $20
  31. Lyn Knipe 
    1 year ago
    $100
  32. Gerard Govender 
    1 year ago
    $7
  33. Mervyn Henderson 
    1 year ago
    $100
  34. Trevor Abromowitz 
    1 year ago
    $324
  35. Cecile Lotter 
    1 year ago
    $100
  36. Meeta Gosai 
    1 year ago
    $100
  37. Craig Kutisker-Jacobson 
    1 year ago
    $100
  38. Stephen Korsman 
    1 year ago
    $350
  39. Grant Holton 
    1 year ago
    $100
  40. Marie-Paule Henshall-Howard 
    1 year ago
    $1,000
  41. Maria Manuela Pinheiro 
    1 year ago
    $20
  42. Robert Grave 
    1 year ago
    $20
  43. Nikolai Mavrodinov 
    1 year ago
    $500
  44. Leone Gous 
    1 year ago
    $500
  45. Ross Kutisker-Jacobson 
    1 year ago
    $400
  46. Rory KJ 
    1 year ago
    $1,000
  47. Melody van Gesselleen 
    1 year ago
    $70
  48. Lara Schoenfeld 
    1 year ago
    $40
  49. James Henshall-Howard 
    1 year ago
    $1,000
  50. James Henshall-Howard 
    1 year ago
    $0

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