My name is Mark Stanley & my wife is Jodi. We have two boys Joel who is 7 years old (dob 27th sept 1995) and Noah who is 4 years old. (Joel is the taller boy in the photo holding the football) Joel was diagnosed at about 7 months old by our pediatrician with the chromosome disorder 49xxxxy.
Joel was born 5lb 9oz and was overdue by about a week. When he was born he was taken aside as he needed assistance to breath otherwise we had no concerns. As the months went by Joel did not reach the milestones of other children. He did not gain much weight and he had a very soft and unusual cry much like at cat, my wife also had a lot of trouble breast feeding at first (but she persisted and breast feed for 14months). We voiced or concerns to our pediatrician and he really didn't think to much was wrong, however he organized a blood test, which when the results were received shocked him as much as it shocked us..
After it was diagnosed we had many sleepless nights wondering what life was going to be like. We were told he may never be able to speak properly & would be very unlikely to attend a "normal" school. Jodi searched everything to ensure we could gain as much information and assistance possible for our little boy. By the time he was one year old he had started an early intervention program, which really has seen him progress. Due to our circumstance, from the age of 18 months Joel also attended a child care centre 3 days a week as Jodi returned to work, this I believe was excellent as he really enjoyed the interaction with the other kids.
Joel did not walk until he was 2 1/2 years old and his speech was quite delayed, however now he can speak and he won't stop.
Joel has the most beautiful nature of any child we have met, he is very caring and really loves to laugh. Since his brother arrived in June 1999 he has excelled further. The two of them are inseparable.
Joel over the early years has had probably a dozen stays in hospital because of his asthma & broncillitisis. He also is extremely allergic to eggs, dairy and peanuts, which resulted in him spending a week in intensive care at 2 years old when he tasted yoghurt. We now carry an adrenalin needle with us in case of emergency, however Joel does know to ask if anything he is offered to eat has milk, nuts or eggs in it.
Joel has progressed well through kindergarten and now is in Grade 1 at the local primary school and doing really well, he has an aid to assist with his reading, writing and speech.
The things Joel has achieved today we never thought was possible from when he was diagnosed. He is the most popular child in his grade at school and looks forwarded to going each day. Maybe this is because he is this smallest and gentlest child.
Some people ask how we do it every day, but as I'm sure you all know we are actually extremely lucky, and really know what the important thing in life are.
Please feel free to email Jodi or Myself, we would love to talk and share our experiences.
Story Submitted by: marks@mel.asean.com.au
