Daniel's Steps - Proximal Femoral Focal Deficiency - PFFD

Daniel was born in 2007. He was born with a condition called Proximal Femoral Focal Deficiency or PFFD for short. Basically, his right hip and femur did not develop properly which means that his right leg is significantly shorter than his left leg. This blog is for Daniel's family and friends to follow his progress and help other families who have a child with PFFD.

Sunday, 1 February 2009

Daniel is Walking!

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Daniel's X-Ray (Prior to any surgery)

Daniel's X-Ray (Prior to any surgery)
March 2008

Daniel's Latest X-Ray

Daniel's Latest X-Ray
February 2013

Coming Up...

  • 8 October 2013 - First Lengthening (Age 6)
  • Age 10 (2017) - 2nd Lengthening
  • Age 14 (2021) - 3rd Lengthening

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      • Daniel is Walking!
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Charities

  • Paley Kids
  • Paley Institute in Haiti
  • Contact A Family
  • STEPS (UK charity)
  • STEPS Facebook Group
  • Limbkids (Australian charity)
  • Peggy & Friends
  • Limbless Association
  • C.H.I.L.D - Children Having Infant Limb Deficiency

Links

  • PFFD Article
  • Dr Paley's St Mary's website
  • STEPS Spica Cast Care Videos
  • PFFD Information Resource
  • Lengthening vs Amputation
  • PFFD Facebook Group
  • PFFD Support Group
  • Hospital in the USA
  • Interview with Dr Paley
  • Dr Dror Paley - website

Videos

  • Michael McKenzie on This Morning (UK)
  • Travis Pollen - Swimmer
  • Dr Paley - Daniel's US Surgeon
  • Rob Brooks - Basketballer (1)
  • Rob Brooks - Basketballer (2)
  • Water is the Great Equaliser
  • Ben's Road2Hope News Bit

Inspirational PFFDers/Limb Lengtheners

  • Benito
  • Hayden
  • Amaya
  • Julie
  • Travis
  • Gracie
  • Jeffrey
  • Evan
  • Carter
  • Saar
  • Macy
  • Aubrey
  • Ethan
  • Daniel
  • Michael
  • Sarah Reinertsen (Triathlete)
  • James
  • Jacob
  • Emily

Inspiration for Fellow PFFD Parents

  • The Mums
  • The Special Mother
  • Welcome to Holland
  • Puppies For Sale

Good Books To Read (Let me know any others)

  • Miracles Happen: One Mother, One Daughter, One Journey - Brooke and Jean Ellison
  • Shut Up About Your Perfect Child - Gina Gallagher & Patricia Konjoian
  • Poster Child - Emily Rapp
  • You Will Dream New Dreams - Stanley D Klein & Kim Schive

Accommodation, Shopping & Things to do in Palm Beach (when visiting Dr Paley)

  • Where we stay - Homewood Suites Palm Beach Gardens
  • Target - good for toy shopping
  • Walmart for cheap clothes (good for fixators) & toys
  • Publix for groceries
  • Barnes & Noble at CityPlace
  • Jupiter Public Library
  • Gardens Mall for Shopping
  • Lion Country Safari
  • Playmobil Fun Park
  • Latte Fun
  • Palm Beach Zoo
  • Lunch at Panama Hatties & Boat Ride
  • Feed Fish at the Marina
  • Turtle Hospital
Contact: danielssteps@gmail.com
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