Ira is two years old and has just started at City Kids to the delight (or maybe chagrin?) of his big sister Edie.
Ira was born with a very rare cranial facial syndrome called Apert Syndrome which affects the way certain bones grow. Apert Syndrome occurs in approximately 1 in 150,000 births and in New Zealand there are about six children we know of who also have it. It is caused by a random chromosomal misfire early on in pregnancy. Without getting technical, too much protein is sent out which fuses certain bones, especially in the head and hands.
Ira was born with a very rare cranial facial syndrome called Apert Syndrome which affects the way certain bones grow. Apert Syndrome occurs in approximately 1 in 150,000 births and in New Zealand there are about six children we know of who also have it. It is caused by a random chromosomal misfire early on in pregnancy. Without getting technical, too much protein is sent out which fuses certain bones, especially in the head and hands.
The syndrome should not affect Ira’s intellectual development, aside from the natural setbacks he has experienced when recovering from corrective surgeries. These setbacks have slowed his development, but in most cases this is quite normal and at around two years of age, Aperts kids tend to catch up rapidly with their peers. We are noticing this is the case with Ira.
In brief, the fingers and toes in Apert Syndrome are fused and the head grows differently due to some of the sutures being prematurely fused.
To date, Ira has had about 15 surgeries. Some minor like widening his nasal passages when he was first born to help him breathe, others major including creating fingers from his fused mitten hands and remodelling his head- more than once. Ira’s mid-face is also set back and only grows at about a third of the rate of the lower and upper face. All of this is corrected over time, probably when he's about six or seven.
He's had to spend more time in the children’s ward at Wellington Hospital than a little guy should. However, through it all he has taken it all in his stride and is a curious and otherwise happy chappy.
As his parents, we encourage questions from other children and parents, and believe that the more people know about his ‘differences’ the better. To those who know him and us, he is just a regular little boy who enjoys the same things as the next kid, but we acknowledge that people may take a second look when they see Ira for the first time – it’s human after all.
An article written by a mum that summarises Apert Syndrome simply and discusses the ups & downs of life looking a bit different is well worth a read:
http://www.nfb.org/images/nfb/Publications/fr/fr29/2/fr290210.htm <http://www.nfb.org/images/nfb/Publications/fr/fr29/2/fr290210.htm>
In brief, the fingers and toes in Apert Syndrome are fused and the head grows differently due to some of the sutures being prematurely fused.
To date, Ira has had about 15 surgeries. Some minor like widening his nasal passages when he was first born to help him breathe, others major including creating fingers from his fused mitten hands and remodelling his head- more than once. Ira’s mid-face is also set back and only grows at about a third of the rate of the lower and upper face. All of this is corrected over time, probably when he's about six or seven.
He's had to spend more time in the children’s ward at Wellington Hospital than a little guy should. However, through it all he has taken it all in his stride and is a curious and otherwise happy chappy.
As his parents, we encourage questions from other children and parents, and believe that the more people know about his ‘differences’ the better. To those who know him and us, he is just a regular little boy who enjoys the same things as the next kid, but we acknowledge that people may take a second look when they see Ira for the first time – it’s human after all.
An article written by a mum that summarises Apert Syndrome simply and discusses the ups & downs of life looking a bit different is well worth a read:
http://www.nfb.org/images/nfb/Publications/fr/fr29/2/fr290210.htm <http://www.nfb.org/images/nfb/Publications/fr/fr29/2/fr290210.htm>
