|
WELCOME TO RYANS WEB PAGE.
Ryan was diagnosed in 2002 with a rare genetic disorder called Fanconi Anemia (FA) he is expected to develop aplastic anemia which means that the bone marrow will stop producing red and white blood cells as well as platelets, the only cure for the anemia is a bone marrow transplant which we are very fortunate that my youngest son Tyler is a 5/6 match.
FA paitents face a long battle to get through this horrible disorder and if successful they then face high chances of secondary cancers.
Some FA children have birth defects and some don't. Ryan was born with no thumbs and has since had 2 major surgeries where they use the index finger to make thumbs this is an amazing piece of surgery, he is also shorter than most kids his age and is having growth hormone at the moment to see if it makes a difference we have seen good results so far.
This page is to keep family and friends updated with Ryans progress on this long road to recovery.
Journal
Sunday, July 25, 2010 10:34 PM CDT Gosh its been ages since i updated this.
Well we have been to America and back, Camp Sunshine was just AWESOME. We meet the lovely families and the boys made some wonderful new friends.I learnt more about FA and what to look for in the years ahead.
We were all very sad to leave Camp Sunshine and our new friends, we hope that we can make the camp next year.
We had a orthopedic appointment today, Ryan is needing surgery on his ankle to fuse the bones, this will stop the pain and discomfort he is getting. Its his decision so we are waiting to hear if he wants to go ahead or not. Other wise we are all well and chugging along in the cold wet winter.
Read Journal History
Links:
|
