Hi, I am Ed’s mom, and as some of you know my 10 year old son got a liver transplant on Aug 22 after a liver disfunction, and a second surgery on Sep 14 for a bowel perforation. Due the high dose of steroids and medications he is taking to protect his graft (new liver), his tissue is very fragile and his incision was kept open to heal on its own.
He was also diagnosed with a rare disease called HLH (Hemophagocytic Lympohistiocytosis) which is a inmune system illness. HLH treatment requires a chemotherapy infusion and more steroids. These meds worsen his heal process.
He also had presence of Chylous Effusion and is now on a minimal fat diet, specifically 5 grams a day. Just as a reference one table spoon of olive oil has 14 grams of fat. So that is very limiting and reduces his protein intake. He needs supplements and protein powders to help his wound healing process and insurance is not covering because its consider as nutrition and not medication.
I was working with a wonderful Realtor Team as a Marketing and Admin Coordinator, and they have been very supportive with us. But for now I need to step aside to make sure my kid gets to his clinic appointments, do his Home Bound School sessions, his wound care visits, labs weekly, HLH treatments and also work on his nutrition. So 100% of my time will be now focused on his recovery.
This GoFundMe would help us with travel and parking expenses to the clinic appointments, labs, nutrition supplements, and wound care supplies for one year.
Feel free to share our story. More updates weekly. With all our hearts and gratitud,
The Madrid Galvin Family