Sunday, May 18, 2014

More May Q and A

Okay, so I have had this question from a couple people in a couple forms and I admit .... I have been avoiding it. What will Ayden Jane's life be like as an adult? Will she be able to self monitor her eating or always need assistance? Will she live independently? Get married? Have a family?
Short answer is no one can say for sure. That answer is filled both with hope and sadness.
As it stands right now, (knowing there are always exceptions to every generalization) adults with PWS require assistance. Many live in group homes with locked kitchens and require a level of supervision 24/7. Some live at home however, they too require a great deal of support and a degree of food security. I don't know that I have heard of any with drivers licences. Whether it is because they would not be able to resist the fast food joints or because the level of executive functioning or processing speed would prevent it I'm not sure.
My thoughts for Ayden Jane and the others her age and younger? There is tremendous reason to hope! Starting gh within the first year of life has made huge improvements for many in cognitive development bringing it close to average for many. It has improved body composition thus allowing for improved metabolism and a more typical amount of calories per day. Research is offering dietary and other avenues to improve some of the symptoms of PWS. Early diagnosis leads to starting these and key therapies early has lessened developmental delays. I could go on...

Okay, so speaking for Ayden Jane, knowing that for whatever reason - genetics, luck or just stumbling along the perfect diet, therapies... God has placed Ayden Jane at the mild end of the spectrum. I work daily to prepare Ayden Jane with the skills she will need to live independently. I believe she will be able to go to college and manage a level of independence. Now will she go to Clemson and become a zoo keeper like she plans? We shall see.

Research is ongoing and some success is being made figuring out what is causing the unrelenting hunger that drives those with PWS to eat and consumes their thoughts making it hard to focus on much of anything else. There are drugs currently in clinical trials that are having success! Whether or not this drug is IT I don't know, but one close to it could be.

So, daily we feed Ayden Jane in such a way that her brain and body develop in the best way possible. We do OT, PT and hippotherapy weekly. We make exercise a part of every day. We are proactive in all areas we know may be affected by PWS. We are keenly aware that despite all this AJ may not be able to live a typical adult life but we are hopeful that by the time she gets to that stage, the current roadblocks will be removed!

I guess, Ayden Jane has taught me not to accept the word impossible or even limited. We will continue to enjoy being totally average, work toward being exceptional and thankful that she is healthy and happy no matter what.

No comments:

Post a Comment