I was born on August 18, 2009, with a rare condition (Congenital Vascular Lymphedema) for which there is no cure.  I am 8 weeks old now, and I have many swollen areas all over my body that are wrapped with bandages to keep the swelling under control. Even my head and neck are affected, but they are much harder to bandage. 

 

     My family just found out that I will need to wear a special custom made suit that they call a "compression garment" for the rest of my life to take the place of those bandages, and help keep the swelling down.  In fact, I need a compression garment for the day and a separate type of compression garment to be worn at night while i sleep.  The two suits do different things to help me, so I really do need both of them.  And the suits come in two pieces; one for my lower body built with velcro in it so diapers can be changed easily, and the other is a vest to cover my upper body that has detachable arm sleeves with gloves for my hands. They say it will probably cost about $14,000 dollars (USD) a month, for our first order of two day suits, and two night suits.  And because I am a baby, and I keep growing, I am going to outgrow my suits and need new ones all the time for a while, so you can see this is likely to be expensive.  My family will be looking around for the best deals, and it looks like the insurance company will be helping out as well.  But since these suits are going to need to be replaced every time I grow, this is likely to be a real financial challenge for my family, and we will need help paying for all the Garments and Non- Medical Expenses and Medical Expenses not covered by Insurance for the care of Kayden Blake Ward.

 

     So far, my family has not been able to find any government funding to pay for these suits, and no non-profit agency capable of covering these costs.  My case was heard at the Health Fair at the State Capital recently which brought attention from Children's Miracle Network, Children's Hospital Foundation, Oklahoma Health Care Authority, and State Representative Dennis Johnson's Office.  Maybe some help will come from those connections, but none so far.  If you know of an agency that helps with things like this, please let my family know. 

 

     I am gaining national attention now, and people from all over are making contributions.  In fact, people as far away as California and Georgia have donated toward my suits.  And this has been noticed by my insurance company, and so we hope to get my first suits sometime soon.  I will let you know when they arrive so you can see pictures of me in them.  Thanks to everyone for fighting for me and not giving up!

 

     I need my first suit now, before the swelling gets even more difficult to control, but it takes 6 to 8 weeks to make a suit, and these companies seem to like being paid before they get started.  My family wants to get started, but they don't have enough money for these expenses.  So we were wondering if you could help us out.  Every little bit will help.  We need help paying for Garments and Non- Medical Expenses and Medical Expenses not covered by Insurance for the care of Kayden Blake Ward.

 

     Thanks for visiting me here.  I wish you could come to see me in person, but because of my condition, my lymphatic system does not function like it should, and so I am susceptible to disease and infection of all kinds. I have no immune system to fight things off.  So I guess these  evisits will have to do. Maybe you could go to my contact page and leave me a message of hope and encouragement.

 

     I hope sometime you will come and visit me here again.  Can you see the butterflies up in the corner of this page?  They represent our hope flying up and up every day. 

Your new friend,

Kayden

 

P.S.  Do you think they can make the suits in blue?