Help Zain go to Hilton Head Island
~~Hello, my name is Amy Kemp. My son, Zain Semones, has a terminal illness called Hunter Syndrome (or MPS II). He is 13, and was diagnosed at the age of almost 6. This upcoming August 25th of 2015 will make his 8th year post-diagnosis. Ironically, Zain has been chosen for a vacation at Hilton Head Island this August 23rd-30th, sponsored by an organization called Hilton Head Heroes. The beach house and some amenities are provided (such as grocery cards), however, I have to provide transportation and spending money, for things such as fun activities and maybe a small souvenier or two for Zain and his Sister, Star. I am a single, stay at home mother and caregiver of Zain, and I see no way to make this happen without the help of others, as I can barely get our basic bills paid and neccesities provided. Also, I have had no financial help in recent months from their father, who is out of work due to his own personal trials. So, my two choices are to do this fundraiser or give Zain's vacation up.
~~To tell you a little about his medical complications and challenges: He's had 18 sedation/surgical proceedures, countless specialty appointments and doctor visits and has also has been receiving a weekly intravenous infusion of Elaprase every week since March of 2008, for which he has a portacath. Also he has a heart murmur and leaky heart valve, airway obstuction, is on his 8th set of ear tubes, mild hearing loss, VP shunt, short stature (he's only 48" tall), severe joint stiffness with associated pain.
~~To tell you a little about Zain: He is a very loveable little boy, who has a million dollar smile and chooses to remain happy and courageous, in spite of all he goes through. He captures hearts everywhere he goes and his personality is magnetic, spreading many smiles along the way of his path. He has a strong passion for Pepperoni Pizza (which he's widely known for), and loves soda pop, movies and has an abundant love for animals.
~~Zain deserves and has earned this trip to the beach. Please help him go if you are able. Words cannot express how grateful I would be. I truly do wish I didn't have to ask for help, but it's the only way, or else he loses his trip. A fellow MPS Dad once said it best about things like this, such as a Make-A-Wish..."This is not a "free" vacation...Zain is paying for it with his life"!
~~If you would like to check out the organization her is the website www.hhheroes.com
Thank you so much, in advance, for any help...and no donation amount is too small!
