Noah K


	Noah K ~ ‘Noah’s Ark / Wild Animals’

DATE OF BIRTH: June 26th, 2001

ILLNESS: Hydranencephaly.




	We just received Noah's quilt in the mail and are overwhelmed with how beautiful it is and how much time and effort has gone into it. It is lovely to read who made each square and to get personal notes from different people. Thank you so much to Linde, Alice, Anne, Ellen, Jillina, Julie, Rae-Maree, Sandi, Sharon, Sharon, Sonya, Susan, Suzanne, Tamara, Val, Susan and Christine. It's very touching to know that strangers would do something so special - from all over Australia and also from around the world. We will always treasure it and know it will give Noah many hours of warmth and comfort. Thank you so much to everyone involved for your time and generosity. Life with a child like Noah isn't easy, but we are so blessed to meet and be in contact with such special people such as yourselves. With love from Aaron and Lisa King and family.


		Noah’s Quilt Stitchers: Australian Alice~Toowoomba, Anne~Lismore, Christine~Campbelltown, Ellen~Gladstone, Julie~Beerwah, Rae-Maree~CambridgePark, Sandi~Tasmania, Sharon~Casula, Sonia~Gladstone, Susan~Tasmania, Suzanne~Tasmania, Tamara~Canberra, Val~Brisbane. International Jillian~NorfolkIsland, Sharon~USA, Susan~Canada.

BIOGRAPHY

When Noah was born he seemed like a 'normal', healthy baby. A few days after he was born he became very unsettled. He cried non stop and hardly slept at all. His body became very stiff and tight. We took him to the GP a number of times, thinking that he was a baby who had reflux. Nothing that we tried helped to settle him, and when Noah was 9 weeks old we finally got to see a paediatrician. Straight away he knew there was some sort of brain damage, by the way that he was holding his body and the sound of his cry - it wasn't a normal baby cry, but a very high pitched scream. The Dr told me that he thought he was having seizures and he wanted us to take him to hospital that day for some tests. He didn't tell me how serious he really thought it was.

After numerous tests the Dr sat us down and showed us a scan of a normal brain. He then showed us the scan of Noah's brain and explained that during the second trimester of the pregnancy it looked like he had a stroke. Because of this his brain was so damaged that most of it was actually reabsorbed and he now had a lot of fluid filling his head, replacing the brain. He was left with around 30% of his brain. He told us the condition was called Hydranencephaly and that it meant he was going to be severely mentally and physically disabled.
He also told us that this meant that he life was going to be very shortened - possibly only living for 2-4 years.
We were also told that he was having frequent seizures and that day he started on an anti-convulsant medication. This really helped to settle him down and he seemed a lot more like a 'normal' baby for a little while - even smiling at us.

As time went on though we soon realised that Noah really was severely disabled. We noticed other babies his age doing many things that he should have been doing. As an infant he was sick quite often, and often hospitalised. He is now 7 years old! He has a lot of ongoing medical needs. He is tube fed through a tube which has been placed in his stomach. He has numerous seizures every single day - up to 30 or more per day. He also gets frequent chest infections and needs suctioning regularly. He often ends up in hospital trying to fight off one illness or another. In his life he has been admitted to hospital over 40 times. He is cortically visually impaired, which means that his eyes are not damaged but the damage to his brain is affecting how much he can see. He is like a little baby in a big boys body. He has been assessed as being like a 3 month old baby. He has never rolled over, or sat up and relies on a wheelchair to get around, and totally reliant on us for everything. He now goes to school full time (when he is well enough) and has a full time aide to help him at school.

We are so grateful for every day that we have with Noah as we know that we are lucky to have him here with us still.

Written by Noah’s Mum.