2 Young lives, 2 different stories, 1 dear friend gone, 1 friend fighting!

My EDS friend Emily (above)

Emily is 19 years old and lives in Florida, she loves to cook, have fun with her friends and she loves her dog. Emily also has Vascular Ehlers Danlos Syndrome. Since I have known Emily she has had severe intestinal and gastric issues. Over the past several months it seems like she's spent far more time in the hospital with very serious issues than she has spent at home. Emily is a champ, she is young, frustrated and scared but she hardly ever shows that! Instead, she radiates strength, faith and courage. Emily has a smile that brightens the darkest of days, even when it's her day that seems the darkest. Emily and her family have not gotten good news this week. When I read the update from Jody, Emily's Mother, I felt sick. Here is that update. 

6 April 2012

Posted 5 hours ago

Dear Friends,

I am sorry I have not posted updates this past week. It has been a very emotional week for our family.I will start with the good news.Emily is doing as well as can be expected and will be coming home tomorrow.We are excited she will be home for Easter and be with her nieces on this day.The sad news is we have learned that things have changed dramatically for Emily. Her health is declining, and she is now more prone to these infections. They say her gut is leaking hence the infections are coming from her short bowel and the fact her stomach does not work any more.

The week has been long as in fact the talk has been of sending Emily home with Hospice.We are already blessed with the love and support of our family and friends and Emily is already on a Hospice program called Partners in Care.With this program in place she gets an aid, pain management and nursing care.If we go full time to Hospice she will be denied her TPN and of course if we take her to All Children's Hospital when she is very sick as we do now she will have to be constantly discharged and re-admitted to Hospice here in Sarasota as All Children's is out of county. The other alternative is to take her to Sarasota Memorial where they can still be involved.

At this time Emily has to have some control, she is adamant she want's to keep going to All Children's for treatment. So she will stay with the Partner in Care Program. She will get all she needs from them including counselling as will Ian and I.As a most of you know, almost 18 months ago we were told Emily would not last more than 3 to 6 months. Yet again Emily proved everyone wrong.Tomorrow we will bring Emily home and we are going to do everything possible to have some wonderful quality time with her. Emily is such an inspiration and a fighter we are praying and hoping she proves them wrong yet again.It seems we will be spending more time in the hospital, but when we are home we want to see our friends, take her out and let her enjoy herself.She is still insisting on doing her cooking classes even though she can no longer eat and is in love with blow pops and strawberry Icee's.On this note I would like to wish you all a Happy Easter, hug your loved ones, remember to tell them you love them.GO TEAM EMILY:)Prayers and hugs to you all

Jody

The picture immediately above is my precious, wonderful and amazing friend, Amanda. Amanda passed away in December. Amanda had a tough time over the past couple of years but she was in no way giving up! That girl lived life like none other, she never passed up anything fun and if she couldn't find fun, she made some! Amanda never missed a beat, she never let anything get her down, she always fought back harder. Amanda's death was TOTALLY unexpected at the time it occurred, God called her home and our Angel flew away. I think of Amanda (Panda) every day and I say a prayer for her Mom, Dad, Brother and Fiance and especially for her little boy Jai (Short-pants). I miss her and I send my love to her every day, swirling through the stars until it reaches her in all of heaven's glory.


These are two very different stories of Vascular EDS. Please pray for Amanda's friends and family. Emily, on the other hand is fighting with all she's got. Never doubt this little lady, she's defied the odds numerous times! God certainly has a purpose in this girls life. Emily has touched so many people with her strength and courage. I'm so sad to learn of the "bad" news she and her family got this week. However, I am certain, beyond any doubt that God is surrounding her with his immense love and magnificence. I KNOW a year from now, no matter where Emily is or what she is doing, she will still be inspiring people, giving hope, and leading the way. God will be working through Emily and her trials and triumphs....Not only today and next week but for many years to come!

Gentle Hugs,
Ila