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 (52)

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

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