Aiden and AJs Fight For The CURE



On December 3rd 2014 these brothers were BOTH diagnosed with a very rare genetic terminal disease called Hunter Syndrome. It is a degenerative disease that over time will slowly take away their ability talk, walk, play, eat, breathe, recognize the ones they love and ultimately live. Sadly, boys with MPS2 or Hunter Syndrome are lucky to live to see their teens. It's affects 1 in 150,000 male births. They were born without an enzyme that washes long chains of complex sugar molecules out of ther little bodies, so over time this waste accumulates in every cell and organ in their body eventually damaging it so they can no longer function properly. This includes but is not limited to their skin, joints, heart, lungs and brain. Both boys have suffered through numerous surgeries, and hospital stays! They have many frequent appointments including pulmonologist , neurologist, gastroenterologist, cardiologist, ENT, geneticist, pediatric orthopedic, and pediatrician. Both boys endure weekly intravenous enzyme replacement therapy infusions that last 4-5 hours and cost around $800,000 dollars a year coming in at the second most expensive drug worldwide. These weekly infusions sadly don't cure the boys but slows down the course of the disease so mommy and daddy have more time with them. They are currently participating in a clinical trial at UNC in North Carolina once a month every month. We as a family of four, fly there every month for a week, stay at hotels, and the boys get an experimental drug injected into their spine so the enzyme will reach their brain and our hope is that it will stabilize their cognitive decline! So far we have seen positive changes in both boys since starting the IT clinical trial and for that we are eternally grateful! For that week both mommy and daddy are both out of work and medical bills and many expenses are adding up! Aiden who is 5 years old and AJ who is 4 will have to have these weekly infusions and monthly trial dosing for the rest of their lives until a Cure is found! Through all this they continue to smile and laugh and live! This is a parents plea to beg you to please help us save our babies. They say it takes a village so help us, please be OUR village! We can't do it alone, but with all your help WE WILL KEEP FIGHTING UNTIL WE WIN! God Bless all of you and please hold your babies extra tight and take nothing for granted..... Thank you so very much
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Donations

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  • Julie Serrano 
    • $50 
    • 16 mos
  • Anonymous 
    • $100 
    • 17 mos
  • Eii Inc 
    • $5,000 
    • 40 mos
  • Ernest Dabbieri 
    • $40 
    • 40 mos
  • Jamie Graziano 
    • $50 
    • 40 mos
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Organizer

Toni Ann Sanchez 
Organizer
Asbury Park, NJ
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