I have a genetic condition.

It is called Spritzen-goldberg syndrome. It is extremely rare. I am the only one in New Zealand with this condition, so far.

Spritzen-goldberg syndrome:-It is a disorder that affects many parts of the body.

People with the syndrome may have long slender fingers, unusually long limbs, a sunken chest, and an unusually long range of joint movement. (ghr.nlm.nih.gov).

There are some things that Riley might never do.

But that is okay, as there are so many other things that Riley is good at. Like doing 300 piece puzzles, creating amazing drawings, building incredible towers, imagining incredible stories, and lots more.

Because of Rileys condition, he has had to have a few operations and procedures done.

His first one was to treat craniosynostosis.

craniosynostosis:-It is a birth defect in which one or more of the fibrous joints between the bones of your baby's skull close permanently, before your baby's brain is fully formed. (mayoclinic.org), and (Childrens colorado.org)

Treating Craniosynostosis involves surgery to correct the shape of the head and allow for normal brain growth.

Cranial vault remodeling involves reshaping of the cranial bones. It involves an ear-to-ear incision and removal of the cranial bone.After the bone is removed it is reshaped and often expanded.This reshaped skull is bolstered with a cranial bone graft and secured with resorbable plates to provide more room for the brain to grow. (hopkinsmedicine.org), and (chop.edu).

You were two and a half years old, when you had this operation. You didn't know what was happening. It must have been quite scary for you. We left you in the operation room and came back to a different person. It was hard to recognise you. Your eyes were swollen shut. You could barely see. I just held you lots and put on Peppa Pig for you to listen to.

We were in the hospital for six days. The best things were going out for outings in the buggy. And getting a visit and photo taken with Hospi.

Unfortunately, while you were recovering at home. I noticed that you were holding your head at a funny angle. You liked to lie on one side. You did not like to be picked up, and when I did, you screamed. You were in so much pain.I knew something was wrong.

It took going to A and E twice, before you were admitted to hospital.

Once we were in hospital it took three weeks for the doctors to work out that you had Torticollis from your Spritzen goldberg syndrome.

They tried a variety of ways to get your neck better.

firstly Traction:- You were placed on a special sloped bed. With a sling tied around your neck. A system of weights were used and the pressure is used to pull the head away from the neck and spine.

You had to stay in this position for most of the day. With short breaks for meals. You were in this for four weeks.