Zachary was born 27 years ago and the first recommendation we received was to amputate his leg. He was given about 25% survival chance at that time if surgery was done. It would still be a lifelong battle since what we were being told at the time was Klippel-Trenaunay-Weber-Syndrome (KTW) even with an amputation. However, this is not his diagnosis anymore when it comes to KTW and instead is typically described as primary lymphedema arteriovenous malformations high output syndrome chronic ITP with a hypoplastic right kidney and hypothyroidism. He was born 10 weeks early. He’s had multiple hospitalizations from cellulitis to the most recent of sepsis staph infections as well. Many people are learning about staph infections now and how some are immune to antibiotics. He has had a surgery at Stanford University where they went in through arteries and veins and tried to kill some of the veins by blocking them. This caused those veins to die while they tried mapping to make sure that the veins that they did block did not feed any of his tissue. However, it caused massive necrosis of his tissue (death) on his leg causing skin and parts basically die due to a lack of blood/oxygen. This, of course, left a scar. It took many months to heal and still to this day he can’t stand to be touched there.
Amputation now is 0% chance of survival (so we have been told) and honestly, Zachary does not want to even think about going through a surgery like that even if he was to survive.
THERE IS NO CURE ONLY MORE MEDICAL COST
I started with a goal of 1,000.00 but honestly over years of compression stockings (on bad days, his leg "leaks" and the compression stockings that cost about 200 each has to be changed), ambulance trips, ER visits, and regular appointments you get to a point of swallowing your pride and asking others for help.
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