This month is a DOUBLE WARRIOR SPECIAL! Please write to both children to let them know how special they are.
Siblings Xander (10) and Lily (13) deal with chronic pain that would floor most people every day of their lives, thanks to a genetic disorder called Ehlers Danlos Syndrome (EDS). EDS is a connective tissue disorder resulting in faulty collagen – which is the body’s glue. Imagine building a brick house with PVA glue instead of cement, and you have an idea of what it’s like to live in a body with EDS. It causes frequent subluxations and dislocations which can be excruciating.
Xander is a beautiful soul who just brightens up anyone’s day with his love and affection. At the moment he needs his wheelchair for school and long trips because his feet “pop” out and cause extreme pain. But even when he is in extreme pain he will still do anything for anyone to help them out. He is a a selfless young man who wants to be a teacher – or maybe a policeman.
Lily was diagnosed with EDS at 3 years old, and since the age of 7 she’s had 8 operations on her knees to help stabilize them. She’s due to have another major surgery in the next 6-12 months.
Lily has had to leave school this year due to her pain and dislocations of her knees and now studies at home, which has left her feeling isolated and lonely. She had major problems with her pain levels and had to be admitted to PCH for 16 days to try and reset her pain levels. They eventually managed to bring them down enough so that Lily can lead a functional life.
Lily is the youngest national women’s wheelchair basketball player. She plays for the Red Dust Heelers and does a lot of community service with them. She got really depressed towards the end of last season as she couldn’t play basketball because of her pain levels. Now that her pain is under control she is back on the court and loving it! She had a minor set back recently when she acutely injured her wrist, but it hasn’t stopped her.
Xander has also started playing wheelchair basketball just like his big sister Lily.Share